Lived experience of people aging with intellectual November 9 th 2014 - - PowerPoint PPT Presentation

AUCD 2014 preconference workshop November 9th 2014 Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen

Lived experience of people aging with intellectual and developmental disabilities (IDD): the use of inclusive research methods

Lieke van Heumen, MS PhD candidate Disability Studies Paul D. Doolen Graduate Scholar for the Study of Aging Department of Disability and Human Development University of Illinois at Chicago

AUCD 2014 preconference workshop November 9th 2014 Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen

Aging of persons with IDD

• Aging with lifelong disability

recent phenomenon (Mosqueda, 2004)

• 641.000 people with

developmental disability over age 60 in US. Numbers to double by 2030 (Heller, 2013)

• Priority population (Bigby, 2000, 2004;

Bigby & Balandin, 2004; Janicki & Ansello, 2000)

• Little is know about disabled

people’s lives over time (Heller & van

Heumen, 2013)

AUCD 2014 preconference workshop November 9th 2014 Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen

Integration of scholarship

• Scholars in gerontology and disability studies have yet

to fully engage with one another’s work (Chivers, 2011)

• Scholarship between both fields needs to integrate (Putnam,

2007)

• Develop a dialectical and inclusive vision on aging (Kennedy

& Minkler, 1999)

• Recognize disability as identity variable in aging

discourse

• Incorporate aging theory and experiences of older people

in disability studies

• Disability studies scholars should show their ideas apply

to persons of all ages (Chivers, 2011; Kennedy, 2000)

AUCD 2014 preconference workshop November 9th 2014 Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen

Including the voice of older people with IDD

• Individual stories hold potential for:
• changing attitudes and
• improving membership in the

community

• Few studies focus on the

experiences of older people with IDD themselves

• Their ability to participate in research

has been questioned

• The challenge is one of METHOD
• Adaptations need to be made to

effectively include this population in research

• Bridge gerontology and disability

studies to increase accessibility of methods

AUCD 2014 preconference workshop November 9th 2014 Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen

Principles of inclusive research

• Addresses issues of importance to people with IDD
• Serves as a tool to improve lives of people with IDD
• Accesses and represents experiences of people with IDD
• Treats people with IDD with respect (Walmsley & Johnson, 2003)
• Supports people with IDD to participate (Walmsley, 2004)
• Creates ‘heterotopia’ (Meininger, 2013)
• Learning process for all those involved
• Grow together and co-create
• Accessibility of research process and content (Kramer, 2014)

AUCD 2014 preconference workshop November 9th 2014 Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen

Study on social relationships of older adults with ID from a life course perspective

• Social relationships important element in quality of life

(Antonucci et al., 2007).

• Social networks are shaped by the life lived (Knipscheer &

Antonucci, 1990).

• Older persons with ID tend to have less robust networks

(Bigby, 2000).

AUCD 2014 preconference workshop November 9th 2014 Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen

Gaps in research

• Body of knowledge incomplete and dated
• Secondary informants exclusively used
• Functional measures only limitedly considered
• Glaring lack of a life course perspective
• Ethical and methodological concerns in life story

research with older people with ID

• Lack of application of gerontological theory to disability

issues

AUCD 2014 preconference workshop November 9th 2014 Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen

Design

• Phenomenological approach
• Qualitative research methods
• 1) Pleasant 2) meaningful 3)

accessible

• Make your methods fit the person, not

the other way around

• Key support person
• Combination of data collection

strategies

• In depth interviews with key

support person and social network maps (Tracy & Whittaker, 1990)

• In depth interviews with persons

with ID

• Creation of lifelines

AUCD 2014 preconference workshop November 9th 2014 Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen

Accessible materials

AUCD 2014 preconference workshop November 9th 2014 Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen

AUCD 2014 preconference workshop November 9th 2014 Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen

Participants

• Purposeful sampling through

agencies in Chicagoland area

• 12 persons with ID
• Between 50 and 70 years of age
• Mild to moderate disability
• Different residential histories
• 8 Caucasian, 4 African-American
• 6 male, 6 female
• 13 key support persons

AUCD 2014 preconference workshop November 9th 2014 Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen

Lifelines

• Big unexpected impact of method
• Effective and powerful tool to engage older adults with ID

in research process

• Icebreaker
• Pleasant experience
• Way to access own memories
• Ownership
• Pride

AUCD 2014 preconference workshop November 9th 2014 Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen

Lessons learned

• Creativity
• Flexibility
• Time

AUCD 2014 preconference workshop November 9th 2014 Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen

Discussion questions

• To what extent have you included the voice of older

people with IDD in research?

• What strategies have you used to make your research

more inclusive?

• What were some of the challenges you encountered?
• What surprised you?
• What would you do differently in future research?

AUCD 2014 preconference workshop November 9th 2014 Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen

Contact information

Lieke van Heumen, MS PhD Candidate, Disability Studies Department of Disability and Human Development University of Illinois at Chicago 1640 W. Roosevelt Rd, #538B, Chicago, IL, 60608 (312) 996-7988 lvheumen@uic.edu