Inclusive research with people with intellectual disability: recognising the value of social relationships as a process of inclusive research

Intellectual disability may affect the access school children have to curriculum and social experiences. While these children often have difficulty with social relationships, academic functioning, and communication, they also may experience pain on a daily basis. Communication difficulties present challenges for school nurses to identify and assess pain in students with intellectual disability. Although considered a gold standard for pain assessment, self-report cannot always be used for students with intellectual disability. School nurses must find methods other than self-reports of pain intensity to adequately assess these children’s pain, such as collaborating with the student’s caregiver(s), observing the student in the classroom, or assuming pain is present and offering an appropriate pain management intervention.

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Development of Deaf Adults with Intellectual Disability in a Therapeutic Living Community

The Journal of Deaf Studies and Deaf Education ◽

10.1093/deafed/enz056 ◽

2020 ◽

Vol 25 (3) ◽

pp. 261-269

Author(s):

Johannes Fellinger ◽

Doris Linzner ◽

Daniel Holzinger ◽

Magdalena Dall ◽

Maria Fellinger ◽

...

Keyword(s):

Conflict Resolution ◽

Intellectual Disability ◽

Intellectual Disabilities ◽

Social Relationships ◽

Case Series ◽

Social Awareness ◽

Adaptive Skills ◽

Social Environments ◽

Deaf Adults ◽

People With Intellectual Disabilities

Abstract People with intellectual disabilities who are deaf face obstacles participating in social environments that do not take into account their need for accessible visual communication. In the present case series, we describe the development of the adaptive skills profiles of eight participants in a fully inclusive therapeutic living community, designed specifically for people with developmental disabilities who are deaf and focused on supporting communication, social relationships, conflict resolution, and work satisfaction. Adaptive skills ratings collected at enrollment and twelve years later suggest increases in social awareness and community living, whereas personal care and homemaking showed relatively little change.

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Family Quality of Life and Its Correlates Among Parents of Children and Adults With Intellectual Disability

American Journal on Intellectual and Developmental Disabilities ◽

10.1352/1944-7558-124.2.99 ◽

2019 ◽

Vol 124 (2) ◽

pp. 99-115 ◽

Cited By ~ 6

Author(s):

Thomas L. Boehm ◽

Erik W. Carter

Keyword(s):

Quality Of Life ◽

Intellectual Disability ◽

Linear Regression ◽

Social Relationships ◽

Family Quality Of Life ◽

Regression Analyses ◽

High Quality ◽

Research And Practice ◽

Relationship Factors

AbstractAll families, including those impacted by disability, desire and deserve opportunities for high quality of life. This study focused on family quality of life (FQOL) among 529 parents with children or adults with intellectual disability (ID). Parents reported moderate to high levels of FQOL satisfaction, with some variability across domains. We conducted hierarchical linear regression analyses to examine associations among FQOL and: (1) individual and family demographic factors, (2) religiosity/spirituality factors, and (3) relationship factors. Findings highlighted the significance of both informal (i.e., family, friends) and formal (i.e., professional) social relationships, as well as the relevance of spirituality/religiosity, as factors contributing to FQOL. We offer recommendations for research and practice aimed at enhancing FQOL of parents with children and adults who have ID.

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Mediators of Inclusion

Research Involving Participants with Cognitive Disability and Difference ◽

10.1093/oso/9780198824343.003.0010 ◽

2019 ◽

pp. 109-120 ◽

Cited By ~ 1

Author(s):

Vanessa Cox ◽

Treena Orchard ◽

Pamela Cushing ◽

Elizabeth Anne Kinsella

Keyword(s):

Qualitative Research ◽

Intellectual Disability ◽

Qualitative Study ◽

Family Caregivers ◽

Social Relationships ◽

Sexual Relationships ◽

Sexual Life ◽

Mild Intellectual Disability ◽

Daily Lives ◽

Study Participants

Adults with mild intellectual disability (MID) often rely on professionals and family for support, giving caregivers the power to control many aspects of their daily lives This extends to research, where investigators wanting to include adults with MID must seek the cooperation of caregivers. This chapter features data from a qualitative study conducted in London, Ontario, that explored independence, sexuality, and social relationships in 15 adults with MID, six family caregivers, and six professionals. Key findings discussed here include the ways in which caregivers influence socio-sexual relationships in adults with MID, the challenges to including adults with MID in research, and the experiences of adults with MID as study participants. These findings contribute new insights to the disability literature that explores research inclusion in adults with MID, as well as the nature of socio-sexual life among these adults, whose first-hand experiences are rarely included in qualitative research.

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FUNCTIONING OF ADULT SIBLINGS OF PEOPLE WITH INTELLECTUAL DISABILITY IN THE AREA OF PARTNER AND SOCIAL RELATIONSHIPS

EDULEARN19 Proceedings ◽

10.21125/edulearn.2019.1145 ◽

2019 ◽

Author(s):

Katarzyna Kruś-Kubaszewska

Keyword(s):

Intellectual Disability ◽

Social Relationships ◽

Adult Siblings

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Residential Transitions Among Adults With Intellectual Disability Across 20 Years

American Journal on Intellectual and Developmental Disabilities ◽

10.1352/1944-7558-119.6.496 ◽

2014 ◽

Vol 119 (6) ◽

pp. 496-515 ◽

Cited By ~ 33

Author(s):

Ashley C. Woodman ◽

Marsha R. Mailick ◽

Kristy A. Anderson ◽

Anna J. Esbensen

Keyword(s):

Down Syndrome ◽

Intellectual Disability ◽

Behavior Problems ◽

Social Relationships ◽

Adaptive Behavior ◽

Family Dynamics ◽

Critical Links ◽

And Behavior ◽

Residential Placements ◽

Residential Transitions

The present study addresses critical gaps in the literature by examining residential transitions among 303 adults with intellectual disability (ID) over 10 years (Part 1) and 75 adults with Down syndrome over 20 years (Part 2). All adults lived at home at the start of the study, but many moved to a variety of settings. Several characteristics of the adults with ID differed across settings, most notably adaptive behavior and the number of residential transitions, whereas characteristics such as age, type of disability, and behavior problems were less predictive of residential placements. The number of moves over the course of the study varied widely, with critical links to earlier family dynamics, social relationships, and health and adaptive behavior.

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Normocentric biases taint cognitive neuroscience and intervention of autism

Behavioral and Brain Sciences ◽

10.1017/s0140525x18002297 ◽

2019 ◽

Vol 42 ◽

Cited By ~ 1

Author(s):

Laurent Mottron

Keyword(s):

Intellectual Disability ◽

Cognitive Neuroscience ◽

Social Motivation ◽

Repetitive Behaviors ◽

Restricted Interests ◽

Autistic People

Abstract Stepping away from a normocentric understanding of autism goes beyond questioning the supposed lack of social motivation of autistic people. It evokes subversion of the prevalence of intellectual disability even in non-verbal autism. It also challenges the perceived purposelessness of some restricted interests and repetitive behaviors, and instead interprets them as legitimate exploratory and learning-associated manifestations.

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