1. AgrAbility NTW McGill QOL Indianapolis, IN November 9, 2011 11:15-12:00 By Robert J. Fetsch, et al. Extension Specialist, Professor Emeritus & Director, Colorado AgrAbility Project, Human Development & Family Studies Colorado State University AANTWMcGillQOL11.0911 (Rev. 11.0211)

2. Increasing Our AgrAbility Clients’ Quality of Life Levels—What Works? (Panel Discussion) By Robert J. Fetsch (CSU), Sheila Simmons (KU), Vicki Janish (UW), Vincent Luke (CSU/Goodwill Denver), Kirk Ballin (ESVA), Bob Aherin (UIL), Inetta Fluharty (WVU), Sharry Nielsen (UN), & Tina Little (CSU)

3. Our AgrAbility Mission The AgrAbility Mission is to enhance and protect quality of life and preserve livelihoods. It’s about supporting and promoting growth and independence. Ultimately it’s about hope. Source: National AgrAbility Project. (2011). It’s about hope [DVD]. Author: Purdue University.

4. Brief Review of the Literature on the MQOL Meyer and Fetsch (2006) reported the impacts of AgrAbility on 618 clients from 8 states. Today’s report is on the second multi- state AgrAbility study with 98 farmers and ranchers with disabilities. Source: Meyer, R. H., & Fetsch, R. J. (2006). National AgrAbility Project impact on farmers and ranchers with disabilities. Journal of Agricultural Safety and Health, 12(4), 275-291.

5. History of National AgrAbility Evaluation Committee Early 2006—Kathryn Pereira, Evaluation Specialist NAP U of WI, invited all SRAP’s to join in an AgrAbility evaluation study. The National AgrAbility Evaluation Committee (NAEC) met approximately bi-monthly (2007- Present) via teleconference/face-to-face (N = 6-25 participants/meeting).

6. History of National AgrAbility Evaluation Committee Who is an AgrAbility Client? An AgrAbility client is an individual with a disability engaged in production agriculture as an owner/operator, family member, or employee who has received professional services from AgrAbility project staff during an on-site visit.

7. History of National AgrAbility Evaluation Committee 5 Questions: – Do our AgrAbility clients increase their QOL? – Are our AgrAbility clients more able to live on, operate, and manage their farms/ranches if they choose? – Are our group mean scores the same as those from the population group’s mean scores? – Is the McGill QOL Survey sensitive to the effects of AgrAbility information, education, & service? – Who else will join us?

8. History of National AgrAbility Evaluation Committee Six SRAP’s conducted a four-year study to answer the first 4 questions (June 2007-July 2011). McGill QOL—CO, KS, NE, VA, WI & WV

9. Measures Used in CO, KS, NE, VA, WI, & WV Study McGill Quality of Life Survey & AgrAbility Independent Living & Operating Survey (ILOS) NAP Demographic Data

10. History of National AgrAbility Evaluation Committee CO, KS, NE, VA, WI & WV obtained IRB approval from their Land-Grant Universities. As of 7/13/11 NE & WV have pre-survey data only. Today we will focus on the results of the 98 closed cases with matched pre-post survey data from CO, KS, VA, & WI.

11. Protocol Procedure—CO, KS, VA, and WI mailed each new client the Pre-Survey, a cover letter, McGill Pre-Survey, and a stamped, self- addressed envelope with an invitation to complete and return it.

12. Protocol Participants were given the choice of completing the survey themselves or of having the items read aloud by the AgrAbility team member. No one was coerced to complete and return their surveys.

13. History of National AgrAbility Evaluation Committee By July 13, 2011 CO, KS, VA, & WI entered their 98 matched pre-post-survey data into Excel files and e-mailed them to CO for entering and analyzing. – KS49 – WI31 – CO15 – VA 3 – Total98

14. Who Were the Participants in the Study? (N = 98) All 98 clients completed AgrAbility. 70 (71%) were male; 27 (28%) were female. 1 did not report (1%). 66 (67%) were new; 24 (25%) were on- going; five (5%) were re-opened; and one (1%) was closed in current grant year.

15. Who Were the Participants in the Study? (N = 98) Ages ranged from 11 to 95 (M = 57.6; SD = 18.7; N = 94). For U.S. farmers and ranchers, the average age was 57.1 in 2007.* Original disability occurred 1934-2010. *Source: Retrieved April 27, 2004 from http://nass.usda.gov/census/

16. What Was the Range and Average Length of Time with AgrAbility? The amount of time spent with AgrAbility ranged from 1 to 38 months (M = 11.8; SD = 6.1; N = 81).

17. What Was the Origin of the Disability? (N=98)

18. Who Were the Participants in the Study? (N=98)

19. What Was the Work Status of the Participants in the Study at Pre-Survey? (N=98)

20. Primary Agricultural Operation of the Participants in the Study at Pre-Survey (N=98)

21. Primary Disabilities (N=98)

22. What Were the Purposes of This Four-Year Study? (N = 98) To determine whether the McGill QOL and the AgrAbility ILOS were sensitive to the effects of AgrAbility. To determine pre-post service changes in clients’ QOL levels and in their ability to live on, operate, and manage their farms/ranches.

23. Q: Do Our AgrAbility Clients Increase Their QOL? A: ?

24. McGill Pre- Post-Survey Changes (Total Score)

25. Q: Do Our AgrAbility Clients Increase Their QOL? A: Yes, they improve on the Total QOL Scale plus on all 6 subscales!

26. Q: Are Our AgrAbility Clients More Able to Live on, Operate, and Manage Their Farms/Ranches if They Choose? A: ?

27. AgrAbility Independent Living & Operating Survey (ILOS) (Manage Farm, Complete Chores, & Operate Machinery)

28. AgrAbility ILOS (Live in Home, Access Workspaces & Modify Machinery)

29. AgrAbility provided me with info/recommendations I used: YesNo To do my farm/ranch work better/more easily than before AgrAbility? (N=58) 85%16% To continue farming/ranching in part/whole, without help I would not have been able to do so? (N=56) 77%23% To continue to live in my home independently? (N=57) 54%46% To continue to live on the farm/ranch, but successfully take up another occupation? (N=56) 7%93% AgrAbility did not provide me with help. (N=56) 7%93%

30. I am able to:SA/ANeitherD/SDNA Complete chores (N=95)80%6%9%5% Operate machinery (N=95)63%6%5%25% Manage farm/ranch (N=95)77%7%3%13% Access workspaces (N=94)84%9%4%3% Live in my home on the farm/ranch (N=95) 92%3% 2% Change/modify machinery (N=94) 48%15%6%31% Receive useful assistance info (N=95) 84%5%6%4% Follow thru on AgrAbility recommendations (N=93) 86%8%5%1%

31. The Top Reasons Clients Were Unable to Follow AgrAbility Recommendations (N = 31) 1.Unable to obtain funding (n = 7/30 = 23%) 2.Health conditions changed (n = 6/31 = 19%) 3.My financial situation changed (n = 3/30 = 10%) 4.Chose a different career (n = 1/30 = 3%) 5.Recommendations did not work for me (n = 1/30 = 3%)

32. Q: Are Our AgrAbility Clients More Able to Live on, Operate, and Manage Their Farms/Ranches if They Choose? A: Yes!

33. Q: What do these 4 SRAPs do well? A: They have pre-post survey data that show statistically significant increases (p <.001) in: -QOL levels -”I am able to manage my farm/ranch.” -”I am able to operate machinery.” -”I am able to change or modify my machinery in order to accommodate my needs.”

34. Q: What do the results say we can improve? A: We can do more as we assist farm and ranch families: -”to complete chores on my farm/ranch” (p <.05) (M=2.46  3.81). -”to access workspaces on my farm/ranch” (N.S.) (M=3.03  3.90).

35. Q: Is the McGill QOL Survey Sensitive to the Effects of AgrAbility Information, Education, & Service? A: Yes!

36. Why Join Us? 1.Document your project’s effectiveness at increasing QOL and ILOS. 2.Enhance your chances of receiving funding next time with empirical evidence of your SRAP’s quality and effectiveness. 3.Increase your chances for outside funding by demonstrating your accountability. 4.Contribute to AgrAbility’s Mission.

37. Our AgrAbility Mission The AgrAbility Mission is to enhance and protect quality of life and preserve livelihoods. It’s about supporting and promoting growth and independence. Ultimately it’s about hope. Source: National AgrAbility Project. (2011). It’s about hope [DVD]. Author: Purdue University.

38. Won’t You Join Us? Here’s how: 1.Send an email to robert.fetsch@colostate.edu. robert.fetsch@colostate.edu 2.Seek IRB approval from your Land-Grant University. 3.Study and use the same protocol. 4.Adapt CO to __ on pp. 1-2 & mail. 5.Enter your data into an Excel file that we will provide, proof perfectly & email to me.

39. Thank you very much!

40. Increasing Our AgrAbility Clients’ Quality of Life Levels—What Works? (Panel Discussion) By Robert J. Fetsch (CSU), Sheila Simmons (KU), Vicki Janish (UW), Vincent Luke (CSU/Goodwill Denver), Kirk Ballin (ESVA), Bob Aherin (UIL), Inetta Fluharty (WVU), Sharry Nielsen (UN), & Tina Little (CSU) &

41. Panel Discussion (KS, WI, IL, VA, WV, NE, CO) 1.What works in our state to increase AgrAbility clients’ QOL and ILOS levels? 2.How can other SRAP’s increase their clients’ QOL levels?

42. Thank you very much!

43. Brief Review of the Literature Quality of Life (QOL) refers to a broad construct that includes physical, social, psychological, and spiritual dimensions of one’s well-being. Many QOL and health-related scales have been used to assess the QOL of individuals with physical and intellectual disabilities, e.g. SF-36.

44. Brief Review of the Literature Historically researchers have focused on the QOL of people with Multiple Sclerosis, arthritis, severe pain from disease, illness, or patients in palliative care. There is a gap in the research regarding the QOL of people with disabilities, especially ranchers/farmers with disabilities. Our work is the first to begin to fill the gap.

45. Brief Review of the Literature Historically employment outcomes have been the sole indicators of VR program effectiveness. But since vocational adjustment and adaptations to a disability/condition are linked with psychosocial adjustment, there is a need for more multidimensional measures like QOL.

46. 3 Shortcomings of Other QOL Tools Led to the Development of the McGill QOL (MQOL) Heavy focus on the physical aspects of QOL Emphasis on compiling lists of problems rather than assessing positive contributions of QOL Notable absence of inclusion of the existential and support domains.

47. What’s Different About the MQOL? Other QOL measures focus heavily on lists of physical symptoms. The MQOL was designed to measure the physical, psychological, existential, and support domains of persons with life threatening illnesses or diseases.

48. What’s Different About the MQOL? Cohen et al. (1995) posit that in individuals facing life-threatening illness, “existential concerns take on a greater importance; energy resources and ability to concentrate are frequently reduced, and those who feel that they have a good quality of life may be referring to something other than physical status.” Source: Cohen, Mount, Strobel, & Bui, 1995, p. 208.

49. What’s Different About the MQOL? The MQOL assesses a person’s existential well-being (meaning of life, purpose, goals, control). It encompasses positive aspects of a person’s life, e.g. existential domain, psychological well-being, and family and community support.

50. The Existential Domain of the MQOL Assesses an Individual’s: Perception of purpose Meaning in life Capacity for personal growth and transcendence

51. The Existential Domain of the MQOL Asks— Over the past two days… I felt that my life has been completely worthless vs. very worthwhile. I have felt that I have no control over my life vs. complete control over my life. I felt good about myself as a person. To me, the past two (2) days were a burden vs. a gift.

52. Brief Review of the Literature on the MQOL The McGill QOL literature includes numerous published research studies, especially in palliative care and with people with terminal and very serious illnesses. The McGill QOL has considerable published research with diverse populations, cultures, and languages, e.g. Korean, Spanish, Taiwanese, and Peruvian.

53. Brief Review of the Literature on the MQOL The McGill QOL has been cross-culturally validated in the Hong Kong Chinese culture, Malaysian culture, and in home hospice settings in Israel. McGill QOL research has been published with diverse populations in palliative care, with HIV Amyotrophic Lateral Sclerosis, terminal cancer, Multisomatoform Disorder, Pulmonary Disease, and eating disorders.

54. Brief Review of the Literature on the MQOL The original study of the MQOL with 40 advanced cancer patients aged 38- 88 reported acceptable reliability rates (.70-.80) Source: Cohen, Mount, Strobel, & Bui, 1995

55. Brief Review of the Literature on the MQOL A second study with 100 people living with HIV also had acceptable Cronbach’s alphas (.77-.86). Numerous other studies provide further evidence of MQOL validity and reliability.

56. Protocol A McGill Post-Survey was mailed out when the client’s case was closed (CO, KS, VA, WI) using a modified Dillman method (KS, VA) with two-week intervals: 1) cover letter, post-survey, and stamped return envelope; and 2) two weeks later a follow-up cover letter, post-survey, and stamped return envelope was mailed. We ran Paired Sample t Tests.

57. Secondary Agricultural Operation of the Participants in the Study at Pre-Survey (N=98)

58. McGill Pre- Post-Survey Changes (Single item Scale, Physical Well-Being, & Physical Symptoms)

59. McGill Pre- Post-Survey Changes (Support, Experiential Well Being & Psychological Well-Being)

60. A: Yes, they improve on the Total QOL Scale plus on all 6 subscales! -MQOL Total Score -McGill SIS -Physical Well-Being -Physical Symptoms -Support -Experiential Well-Being -Psychological Well-Being

61. The results of this four-state study show that all of the McGill QOL group mean scores increased from pre- to post-survey plus manage farm, operate machinery, and modify machinery***. We invite you to join us! See me today, send me an e-mail, or give me a call.

62. How Reliable Are the Subscales? A common measure of reliability is Cronbach’s alpha. SubscalePrePost Physical Symptoms.60.84 Psychological WB.92.91 Experiential WB.93.91 Support.87.81 MQOL Total.79.86

63. Conclusion WI, KS, VA, WV, MO, NE, OH, TX, AND CO SRAP’s, keep up your good work! You too can determine if your AgrAbility Project works at enhancing your clients’ QOL & ILOS levels! Won’t you join us?

64. Conclusion When we get more matching pre- and post-survey data from as many of you as possible, we should have even stronger empirical evidence that AgrAbility works!

65. A: Yes, we see the best improvements on: -Manage farm/ranch -Operate machinery -Modify machinery.

66. Are we doing as much as we can to assist our clients to: -Complete chores -Live in home on farm/ranch -Access workspaces.

67. Q: Are Our Group Mean Scores the Same as Those from the Population Group’s Mean Scores? A: ?

68. Q: Are Our Group Pre-Survey Mean Scores the Same as Those from the Population Group’s Mean Scores? A: When we look at our sample’s Pre- Survey group mean scores, on 4/7 scales they are within the normal range (MQOL Total, MQOL Single-Item, Physical Well- Being, and Psychological Well-Being).

69. Q: Are Our Group Pre-Survey Mean Scores the Same as Those from the Population Group’s Mean Scores? A: On the Support Subscale at Pre- Survey, our sample scored statistically significantly lower than the population mean score. At Post-Survey, it rose to a level that was not significantly different from the population mean.

70. Q: Are Our Group Post-Survey Mean Scores the Same as Those from the Population Groups’ Mean Scores? A: No, all are statistically significantly higher except for Support which rose to a point that was not significantly different from the population mean.

71. A: No, 6/7 are statistically significantly higher: -MQOL Total Score*** -SIS*** -Physical Well-Being*** -Physical Symptoms*** -Psychological Well-Being*** -Experiential Well-Being***

72. A: Our group started out significantly lower on the Support Pre-Survey (6.16)*** and ended up about the same as the population mean score (7.7/8.0) N.S. We give them hope!

73. Pros of Using the McGill QOL and Independent Living and Operating Surveys Pros – Today 6 states are using the McGill (CO+KS+NE+VA+WI+WV). – Three more states are seeking IRB approval (MO+OH+TX) – The McGill is a well-tested, valid, and reliable tool. – It provides data that can be aggregated and/or compared across state lines.

74. Pros of Using the McGill QOL and Independent Living and Operating Surveys Pros – It is short (17 items) and is easy to complete. – The combination of the McGill QOL Tool with the AgrAbility ILOS provides empirical evidence that AgrAbility works.

75. Cons of Using the McGill QOL and Independent Living and Operating Surveys Cons – It costs you a little extra time and effort. – To use the McGill QOL Tool with non-English- speaking or severely visually impaired farm/ranch workers, it is recommended that one read aloud each item and score the client’s response for them.