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Texas Tech University • College of Education

AER International • August 1, 2014 • San Antonio, TX

R E B E C C A M . S H E F F I E L D

Quality of Life for Young Adults Who Are Blind: What We Know and What We Can

Do with Quality of Life Research

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Objective: Attendees will gain an increased understanding of QOL’s impact on global research and development and will be encouraged to consider evaluating their own programs and efforts in terms of QOL impacts.

• My background• Background for study• Research questions• Methods: Participants, interviews, analysis• Findings: Six themes• Conclusions• Implications• Recommendations

AGENDA

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• Special educator, Teacher of students with visual impairments• Social justice and participatory

research• International efforts• Quality of life should be an important

outcome measure in educational and human-rights focused programs and projects.• Qualitative and quantitative methods

are equally useful and necessary.

MY BACKGROUND

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• Pressing need to evaluate the efficacy of disability rights interventions and identify best practices

• The construct quality of life (QOL) is an appropriate outcome measure for interventions related to the 2006 United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) (Karr, 2011; Verdugo, Navas, Gómez, & Schalock, 2012).

• No validated instrument for studying QOL in populations that include persons with visual impairment

• Statistical validation of a QOL instrument requires an established understanding of the meaning of QOL for persons with VI.

BACKGROUND FOR STUDY

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Theory of QOL for persons with VI Instrument validation

Meaningful inclusion of people with VI in QOL studies to evaluate

effectiveness of disability rights interventions

• Problem: There is no existing theory of QOL as understood and experienced by persons with visual impairment.

• Purpose: to provide researchers, human rights organizations, educational advocates, and others with a better understanding of quality of life for young adults who are blind

WHY CONDUCT THIS RESEARCH?

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• Existing instruments • QOL.Q & IASSID’s SIRG-QOL• WHOQOL

• World Bank’s Development Impact Evaluation Initiative (Legovini, 2010)

• UNCRPD United Nations (UN) documents, reports, and implementation studies (Rieser, 2012; Jolly, 2010; European Foundation Center, 2010; International Disability Alliance, 2012)

• Measurement tools and persons who are blind• Incidence (WHO, 2010 & 2011, UN Department of Public

Information, 2006)• Access (Thompson, Johnstone, & Thurlow, 2012)• Validity (Hannan, 2007; Geisinger , 1994; Reid, 1998 & 2000;

Loeding & Greenan, 1998)

WHAT’S IN THE LITERATURE?

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Primary question: What is the essence of “quality of life” as experienced by young adult students who are blind and enrolled in postsecondary educational programs?Secondary questions:1. How is the essence of quality of life as experienced

by young adult students who are blind influenced by the student’s primary and secondary school experiences?

2. To what extent is the essence of quality of life experienced by young adult students who are blind similar to/different from the theoretical models, constructs, and indicators of quality of life present in existing quality of life instruments and research?

MY RESEARCH QUESTIONS

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Mixed-methods line of research

Paradigm: Qualitative methods•QOL research aims to improve QOL for marginalized people by measuring and monitoring trends in people’s experiences; therefore participatory, qualitative studies are well suited for investigations related to QOL.

Phenomenology•deals with questions of meaning-making and the essence of experience, seeking to uncover a deep understanding of participants’ lived experiences (Smith, Flowers, & Larkin, 2009).

Semi-structured, phenomenological Interviews + Thematic, cross-case analysis

METHODS FOR MY STUDY

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Alex Brianne Darik Janessa Martin Tess

Age 20 19 22 20 19 22

Gender male female male female male female

Ethnicity Caucasian CaucasianAfrican-

AmericanAfrican-

AmericanHispanic-American

Caucasian

Origin of visual

impairment

bilateral retino-

blastoma

optic atrophybilateral retino-

blastoma

bilateral retino-

blastoma

medical treatment

during infancy

anopthalmia, micro-

opthalmia

K-12 experienc

e

public schools

public schools

public schools 

public schools

mixedpublic

schools

post-secondary experienc

e

university

transition program,

rehabilitation center

rehabilitation center,

university

transition program,

rehabilitation center,

community college

transition program,

community college

university

METHODS: SIX PARTICIPANTS

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Three interviews:

1. Participant’s life historyStarting with when you were young until today, tell me about times when things have gone really well in your life.

2. Details of relevant experiencesTell me about the people in your life who help you when things aren’t going well. What is your relationship like with them?

3. Meanings made by participant about experiencesWhat about the future? What will need to happen for things to go well in your life?

• Following Seidman’s (2013) phenomenological interview protocol.

METHODS: THREE, 60-90 MINUTE INTERVIEWS WITH EACH PARTICIPANT

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METHODS: ANALYSIS (MAXQDA)

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Quality of Life

External Support System

Inter-dependence

Internal Support System

Independence

Experiences

Knowledge and Skills

FINDINGS: SIX THEMES

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State and social

programs

Money

Support from family

“…there are a lot of barriers in professional fields, career fields. I still feel that there is prejudice regarding whether or not a blind person can do

certain activities... There are exceptional blind people who forced the field to

accept them, but they are the exceptions” (Alex)

Equal access

“…I do think that having access to the latest technology is really important. So, I think that I’m going to have to rely on gaining employment and earning the money necessary to pay for technology …” (Martin)

Technology

“…in my 14, 15, 16-year-old mind, I wasn’t like them. I

didn’t have much that I could identify with them. So I didn’t, I wasn’t one to want

to go be part of the blindness community” (Tess)

Blind Communit

y

“…you can make a living. And still learn, which was my ultimate thing [emphasis added]. I wanted to still be learning and teaching…” (Darik)

Education and

learning

THEME: EXTERNAL SUPPORT SYSTEM

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Being in motion

Making mistakes

“Pottery also helps. It helps relieve stress, because of all the rolling and pounding that you have to do…. [and] when it's 75 degrees outside and you can just walk, I'm good with that too. And listening to music helps a little, not much but it does” (Brianne)

Outlet

“…And I ended up in a mall, sort of plaza thing. I had no idea where I

was, I just knew I was in a mall. And I decided, “All right well, I guess I’m lost for the day. I’m going to go get

some McDonald’s” (Alex)

Going places

“…people have to go out there and, and also you get the benefit of knowing that you’ve earned the money. By, you know, putting effort into your work” (Martin)

Doing somethin

g meaningf

ul

THEME: EXPERIENCES

Integrating with

sighted people

Being accepted

and included

“for reasons unknown to me they would all just fade away and hang out with my sister more. She was the popular one and everybody loved her. I mean she wasn't popular, but everybody loved her” (Brianne)

Insensitivity

“But think about it, when it’s no longer convenient for them, when

it’s no longer cool, or whatever, they’ll walk away without a second drop of a hat. And they’ll be out of

your life quicker than you can blink. ...Because you were just a

project for them” (Tess)

Being social

“…when that choice of how much you depend on someone else is taken away from you, …You know that saying about being in a well-appointed cage, or a well-appointed prison?” (Darik)

Accepting help

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THEME: INTERDEPENDENCE

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“… our job is to get the boss – like make a little joke or just lighten the boss up then go into details... that they don’t really need to assist you with much. You just need a little bit of help, and, you’re doing it just like the sighted people” (Janessa)

Self-advocacy

“... as I was growing up, not knowing the skills

that I'm learning now, to be able to be

independent... I used to have to depend on my

mom for every little thing, which I did not like

it all” (Brianne)

Self-reliance

“…if you advocate independence and allow blind people to make the choice for themselves, then you will have much more informed and much more culturally aware blind people who are capable of integrating with the sighted community…” (Alex)

Self-determinatio

n

THEME: INDEPENDENCE

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Career and college

prep

Writing

“…if a blind person knows how to perform certain independent living skills like wash their clothes, dress properly, tie their shoes, even shave. The automatic assumption or question is, “What school did you go to? What blind school taught you how to do this wonderful thing?” (Darik)

Daily living skills

“People are being directed more towards utilizing computers now

than braille. Like I said, I can’t emphasize how braille is important, so important”

(Martin)

Braille

“[A] lot of the O&M skills, I learned them but I didn’t necessarily apply them until I got out into the real world and said, “Oh look, well I do need to use these” (Alex)

Orientation and

Mobility

THEME: KNOWLEDGE AND SKILLS

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Proactivity

Adaptability

“When things are going well I’m very content... as opposed to restless. When things are... not going as I want them to, when my life isn’t going the right direction I feel very discontent, and very restless” (Alex)

Contentment

“My mom and dad are both hard workers, I think that’s

where I get it from. Because although I might have fun, I

also know what I need to get done, and know how to

balance, the work-life and the fun, socializing” (Janessa)

Working hard

“To some degree, in the back of your mind, if you are making a friend, and you’re just getting to know them, you’re afraid – because you’re afraid if you tell them the wrong things they’ll think that you are needy” (Tess)

Confidence

THEME: INTERNAL SUPPORT SYSTEM

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Theme Alex Brianne Darik Martin Janessa Tess Total

External support system

138 103 132 130 95 300 898

Experiences 77 35 77 52 59 125 425

Inter-dependence 54 36 70 41 45 134 380

Independence 49 22 50 32 31 54 238

Internal support system

23 6 41 19 19 48 156

Knowledge & skills 33 31 35 31 16 41 187

Total text segments 374 233 405 305 265 702 2284

FINDINGS: WITHIN AND ACROSS PARTICIPANTS

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• Quality of life for young adults who are blind can be described using six major themes: external support system, experiences, interdependence, independence, internal support system, and knowledge and skills.

• A few key ideas:• None of these themes is unique to “blindness” or

“disability”• Parents/families as an important part of the external support

system• Rural vs. urban communities, transportation, efficiency• Assistive technology• Balance between independence and interdependence• Authentic learning experiences; learning from self, parents,

and community• Individuality of internal support system, levels of comfort

CONCLUSIONS: PRIMARY QUESTION

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• The essence of quality of life as experienced by young adult students who are blind is influenced in multiple ways by the students’ primary and secondary school experiences• A few key ideas:• Limited variation in participants’ school experiences;

however a few thoughts on public vs. residential schools

• Mixed opinions about short-term and summer programs

• Bullying and peers

CONCLUSIONS: SECONDARY QUESTION 1

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• The essence of quality of life experienced by young adult students who are blind has both similarities to and differences from the theoretical models, constructs, and indicators of quality of life present in existing quality of life instruments and research.

• IASSID SIRG-QOL (Schalock & Verdugo, 2002)• Similarities: “Self determination,” “material well-being,”

“external system of supports,” “education,” “social inclusion,” “interpersonal relations,” “emotional well-being”

• Differences: micro-/meso-/macro- structure, “rights,” “physical well-being”

• WHOQOL (WHO DMHPSA, 1997)• Similarities: “independence,” “environment,” “psychological,”

“social relationships”• Differences: “knowledge and skills” and “experiences” not

present in WHOQOL, “physical health,” “spirituality/religion/personal beliefs”

CONCLUSIONS: SECONDARY QUESTION 2

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• Model of QOL for young adults who are blind • Basis for mixed-methods line of research including future

quantitative instrument development and dissemination• Evidence-based interventions for improving the lives of

people with disabilities

• Six themes prompt us to consider ways to:• help people acquire desired knowledge and skills• bolster individuals’ internal support systems• promote healthy interdependence• enhance independence• offer access to desired experiences• and improve access to and delivery of necessary and

preferred external supports.

IMPLICATIONS

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• We must continue asking questions and learning from the experiences of people who are blind and visually impaired in order to address barriers and increase access to lives of quality and equality.

• Additional qualitative research is needed with younger and older people, with K-12 students and with non-students, and with people who are blind as well as people with other levels of visual impairments.

• Consider this multi-dimensional, human-rights approach to QOL as an important outcome measure in educational programs and beyond. In so doing – we will know that the work being done and the outcomes being measured are meaningful and relevant to people with visual impairments.

RECOMMENDATIONS

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• More research – what is the true impact of daily living skills and social skills instruction?• Especially for students with multiple disabilities

and/or students with less supportive families• How can we support families in teaching daily living

skills?

• Schools must have plans for responding to exclusion and intolerance.• Social services must be evaluated for their

efficiency and ability to promote QOL.

RECOMMENDATIONS, CONT’D

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• European Foundation Centre. (2010). Study on challenges and good practices in the implementation of the UN Convention on the Rights of Persons with Disabilities: Compendium of good practices. Brussels.

• Geisinger, K. F. (1994). Psychometric issues in testing students with disabilities. Applied Measurement in Education, 7(2), 121–140.

• Hannan, C. K. (2007). Exploring assessment processes in specialized schools for students who are visually impaired. Journal of Visual Impairment & Blindness, 101(2), 69–80.

• International Disability Alliance. (2012). Towards the full implementation of the CRPD: Activities undertaken within and connected to the project supported by the Australian Agency for International Development , Department for Disability-Inclusive Development.

• Jolly, D. (2010). Pilot study : The UN Convention on the Rights of Persons with Disabilities.

• Karr, V. L. (2011). A life of quality: Informing the UN Convention on the Rights of Persons With Disabilities. Journal of Disability Policy Studies, 22(2), 67–82. doi:10.1177/1044207310392785

• Legovini, A. (2010). Development Impact Evaluation Initiative : A World Bank-wide strategic approach to enhance developmental effectiveness.

• Loeding, B. L., & Greenan, J. P. (1999). Relationship between self-ratings by sensory impaired students and teachers’ ratings of generalizable skills. Journal of Visual Impairment & Blindness, 93(11), 716–729.

REFERENCES

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• Reid, J. (1998). Assessing the literacy of adults who are visually impaired: Conceptual and measurement issues. Journal of Visual Impairment & Blindness, 92(7), 447–453.

• Reid, J. (2000). Research notes. Initial evaluations of mainstream personality tests for use with visually impaired adults in vocational assessment and guidance. Journal of Visual Impairment & Blindness, 94(4), 229–231.

• Rieser, R. (2012). Implementing inclusive education: A Commonwealth guide to implementing Article 24 of the UN Convention on the Rights of Persons with Disabilities (2nd ed.). London: Commonwealth Secretariat.

• Schalock, R. L., & Verdugo, M. Á. (2002). Handbook on Quality of Life for Human Service Practitioners. (D. L. Braddock, Ed.). Washington, DC: American Association of Mental Retardation.

• Seidman, I. (2013). Interviewing as Qualitative Research: A Guide for Researchers in Education & the Social Sciences (4th ed.). New York: Teachers College Press.

• Thompson, S. J., Johnstone, C. J., & Thurlow, M. L. (2002). Universal design applied to large scale assessments (Synthesis Report 44). Minneapolis, MN.

• United Nations Department of Public Information. (2006). Some facts about persons with disabilities. Convention on the Rights of Persons with Disabilities. United Nations. Retrieved March 24, 2013, from http://www.un.org/disabilities/convention/facts.shtml

• Verdugo, M. Á., Navas, P., Gómez, L. E., & Schalock, R. L. (2012). The concept of quality of life and its role in enhancing human rights in the field of intellectual disability. Journal of Intellectual Disability Research, 56(11), 1036–45. doi:10.1111/j.1365-2788.2012.01585.x

• World Health Organization Division of Mental Health and Prevention of Substance Abuse. (1997). WHOQOL: Measuring Quality of Life. Geneva, Switzerland.

• World Health Organization. (2010). Global data on visual impairments. Geneva.• World Health Organization. (2011). World report on disability. Geneva: World Health

Organization.

REFERENCES, CONT’D

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W W W. R E B E C C A S H E F F I E L D . C O M • R E B E C C A M S H E F F I E L D @ O U T L O O K . C O M

THANK YOU