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1 Texas Tech University College of Education AER International August 1, 2014 San Antonio, TX REBECCA M. SHEFFIELD Quality of Life for Young Adults Who Are Blind: What We Know and What We Can Do with Quality of Life Research

2 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 2

3 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 3

4 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 4

5 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? 5

6 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? 6

7 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 7

8 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 8

9 AlexBrianneDarikJanessaMartinTess Age 201922201922 Gender malefemalemalefemalemalefemale Ethnicity Caucasian African- American Hispanic- American Caucasian Origin of visual impairment bilateral retino- blastoma optic atrophy bilateral retino- blastoma medical treatment during infancy anopthalmia, micro- opthalmia K-12 experience public schools mixedpublic schools post- secondary experience university transition program, rehabilitation center rehabilitation center, university transition program, rehabilitation center, community college transition program, community college university METHODS: SIX PARTICIPANTS 9

10 Three interviews: 1. Participant’s life history Starting with when you were young until today, tell me about times when things have gone really well in your life. 2. Details of relevant experiences Tell 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 experiences What 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 10


12 Quality of Life External Support System Inter- dependence Internal Support System IndependenceExperiences Knowledge and Skills FINDINGS: SIX THEMES 12

13 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 Community “…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 13

14 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 something meaningful THEME: EXPERIENCES 14

15 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 15 THEME: INTERDEPENDENCE

16 “… 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- determination THEME: INDEPENDENCE 16

17 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 17

18 ProactivityAdaptability “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 18 THEME: INTERNAL SUPPORT SYSTEM

19 Theme AlexBrianneDarikMartinJanessaTess Total External support system 13810313213095300898 Experiences 7735775259125425 Inter- dependence 5436704145134380 Independence 492250323154238 Internal support system 2364119 48156 Knowledge & skills 333135311641187 Total text segments 3742334053052657022284 FINDINGS: WITHIN AND ACROSS PARTICIPANTS 19

20 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 20

21 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 21

22 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 22

23 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 23

24 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 24

25 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 25

26 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 26

27 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 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 27


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