Psychosocial Adjustment to Ostomy Surgery

1. Psychosocial Adjustment to Ostomy Surgery Michael Gerald

2. Contact Information Michael Gerald me.gerald@gmail.com (530) 312-7820

3. Who am I? Michael Gerald Ostomate for over 22 years Diagnosed with a Lymphangioma (benign tumor) in my left buttock at birth Extremely Rare location and circumstances First ostomy surgery at 18 months (Transverse Colostomy) Second ostomy surgery at age 12 (Sigmoid Colostomy) Medical treatments for the Lymphangioma included Laser surgeries for the cysts on the skin and sclerotherapy to shrink the tumor Complete excision of the Lymphangioma has been deemed impossible due to the interweaving of the tumor with blood vessels Currently I do not receive ongoing medical treatment and instead prevent infections by maintaining overall health

4. Former Athlete

5. Professional Life California State University Fresno B.A. - Psychology (2008) Emphasis in Applied Behavior Analysis (ABA) M.S. – Rehabilitation Counseling (In progress) Thesis: Utilizing Self-Management Techniques to Improve HIV Treatment Adherence Among Transgender Patients with HIV Paraeducator – Yolo County Office of Education 1:1 work with Children with Autism Health Educator – Planned Parenthood Mar Monte Reproductive Health Presentations Behavior Specialist – Learning ARTS Fresno 1:1 Behavior Management with Children with Autism

6. Volunteerism/Internship Server – Yolo County Wayfarer Center Served dinner on Mondays to the Homeless Coach – YMCA Coached Boys and Girls Basketball & Soccer Mentor – Youth 2 College Worked with a High School student preparing for college Counselor – St. Agnes Hospice Footsteps Provided group grief counseling for youth who have experienced a loss Outreach Worker – Planned Parenthood Mar Monte Distributed Condoms and Reproductive Health Information at various sites and events Intern – Westcare Fresno Provided Individual and Vocational Counseling to clients in a residential recovery center

7. Youth Rally Camper at Youth Rally for three years (1999, 2000, 2001) Did not like it Returned to Youth Rally in 2007 as a CIT Dressed as a woman trying to portray Miss Jay in America’s Next Top Model Special Counselor – 2009-Present Responsible for Writing and Directing Self-Esteem Skit Responsible for providing counseling services to youth experiencing homesickness or other emotional concerns

8. Scene #1 Our main character is experiencing a lot of symptoms from IBD and is seeking a consultation with their doctor Unfortunately, the very idea of an Ostomy tends to elicit a disgust response in those who are naïve to the procedure Having said that, presentation of the possibility of Ostomy surgery requires a gentle delivery of both the negative and positive elements of Ostomy surgery

9. Psychosocial Issues for Persons with Disabilities Michael Gerald

10. Scene #2 Recovering from Ostomy surgery is not only physically arduous, but the behavioral adjustments can be just as stressful Although Ostomy surgery does not necessarily result in physical limitations extending beyond defecation, managing leaks, gas, bulges, intimate partners, and the procurement of supplies can provide significant barriers to adjustment When discussing life with an Ostomy it is important to approach patients holistically, accounting for as many situations as possible

11. Referencing Persons with Disabilities A report issued by the Research and Training Center on Independent Living (2008) indicated these guidelines: Do not focus on disability unless it is crucial to a story Focus on social or quality of life factors; avoid “tear-jerkers” People-First language Person with an Ostomy; Person with a Disability (PWD) Do not portray successful persons with disabilities as heroic overachievers Avoid emphasizing the need to be superhuman Avoid sensationalizing and negative labeling Avoid “crippled with”, “victim of”, “afflicted”

12. Referencing Persons with Disabilities Emphasize Abilities not Limitations Uses a wheelchair versus confined to a wheelchair Bypass condescending euphemisms Handicapable, Special, Challenged, Differentially Abled Maintain the integrity of the individual Do not use words regarded as offensive such as cripple, freak, maimed, abnormal

13. Definitions of Disability (Riggar and Maki, 2004) According to the Americans with Disabilities Act (ADA) a Person with a Disability is a person who: Has a mental or physical impairment that substantially limits one or more daily life activities Has a record of such an impairment Is regarded as having such an impairment This is important because persons who appear to have a disability are often affected by disability prejudice just as much as those with diagnosed impairments

14. Historical Perceptions of Disability “Society’s treatment of people with disabilities over time has depended upon perceptions related to the cause of disability, medical knowledge, the threat posed to persons without disabilities, economic conditions of the time, and prevailing sociocultural philosophy.” (Riggar & Maki, 2004)

15. Historical Perspectives on Disability Ancient Greece and Rome PWDs were thought to be victims of supernatural forces The Middle Ages Dominance of Christianity in this time period attributed disability to punishment from God or possession by the devil Colonial America Immigration restrictions are placed on PWDs due to the perceived cruelty of the new frontier American Civil War Civil War aided in the development of the Rehabilitation movement by increasing the visibility of PWDs

16. Models of Disability in Society (Smart, 2008) Biomedical Pathology or defect is present within the person Treatment involves addressing the pathology within the person; focus is on a cure Historically, this has lead to the devaluing of persons with disability as defective, even deviant Environmental “The individual’s environment, both social and physical, can cause, define, or exaggerate a disability” (p. 65) Environments can limit access to work, education, and social inclusion The introduction of ramps, psychotropic medications, and specific vocational training schools have changed the way disability is viewed and the way persons with disabilities (PWD) adapt to society

17. Models of Disability in Society (Smart, 2008) Functional The functions of the individual define the disability The ability to carry out the specific duties of a job or activity limits the disabling extent of pathology Relies heavily on the availability of adaptive technology Example: Concert pianist losing a finger Sociopolitical Disability is a societal concern Birth of the Independent Living movement lead to this conceptualization Those without health insurance, those with low educational attainment, those who work in physically dangerous/demanding jobs, and those who live in poverty are more likely to acquire a disability

18. Notes on Models of Disability Although there is something clearly visible or biological about pathology, discrimination and prejudice are societal constructs and are not caused by a given disability Social service agencies that work with PWDs (SSA, DOR, Medicaid) are often based on the Biomedical model This has a dramatic impact on the treatment of PWDs and their experiences with these service agencies

19. Sources of Prejudice and Discrimination for PWDs Evidence suggests that PWDs have experienced more prejudice and discrimination than any other group in history (Smart, 2009) Practices such as killing babies with disabilities, forced sterilization, institutionalization, and mass murder Unresolved feelings of persons without disabilities (PWOD) about disability serves as a source of prejudice and discrimination

20. Sources of Prejudice and Discrimination for PWDs The economic threat How much does the PWD cost society? The safety threat The risk of contagion or contamination Ambiguity ascribed to PWDs by PWODs Perceiving disabilities to be worse than those with a disability The salience of the perceived defining nature of the disability Perceiving the disability as the most important aspect of the PWD

21. Sources of Prejudice and Discrimination for PWDs Inferred Emotional Consequences of the Disability PWODs ascribing tragic evaluations to experience of having a disability Societal Emphases on Health, Fitness, and Beauty Beauty, physical symmetry, and sexuality are all highly valued in our society Fear of acquiring a disability Fears of acquiring a given disability influence utility ratings of disabilities

22. Response to a Disability (Smart, 2009) Cognitive How a person thinks about their disability A positive response to disability involves redefining reality as opposed to denying it Behavioral Compliance with treatment regimens; seeking out social support; returning to work Affective How an emotional feels about their disability and how they manage emotions

23. Individual Response to Disability (Smart, 2009) Indications of maladaptive responses to disability The individual perceives his or her disability as: Loss of status Loss of social support Loss of functioning Loss of control: fear of isolation, dependency, and being a burden to others

24. Stage Model of Adaptation to Disability (Smart, 2009) Shock Feeling overwhelmed or confused regarding the unexpectedness or devastating impact of the disability Defensive Retreat or Denial Denial of the presence, implications, and permanence of the disability Depression Attempting to retain his or her former identity Personal Questioning Individual may ask, “Why me?” in questioning fairness of the disability Integration and Acceptance Readjustment of goals, accepting reality, utilization of skills and abilities

25. Adaptation to Ostomy Surgery Michael Gerald

26. Specific Psychosocial Concerns with Ostomy Surgery (Falvo, 2005) Stress Depression Anxiety Avoidance of social situations due to concerns over odor and noises from stoma Alteration of body image Sexual issues ranging from disruption to dysfunction Negative partner or family members reactions Issues in paying for or acquiring ostomy supplies

27. Introduction Ostomy surgery can be both a life-saving and a life-altering surgery that can lead to improvement or disruption in life activities The key is to remember that Ostomy surgery does effect (although not always negatively) virtually every aspect of a person’s life When speaking with an Ostomy patient it helps to remember that although their situations may be unique, their concerns, hopes, dreams, and desires, remain the same as a non-Ostomate

28. Scene #3 In the third skit our patient is adjusting to life with an ostomy Issues such as gas and leaks are not always addressed for patients prior to surgery; and even if they are, the experience can still be very shocking Resuming normal life activities, including intimacy, can be difficult with an ostomy, but adapting, rather than avoiding, is always the optimal solution

29. Quick Exercise

30. Introduction Ostomies and Decision Making (Amsterlaw, Zikmund-Fisher, Fagerlin, & Ubel, 2006) Participants were given a choice between 2 surgeries: One surgery had a 80% success rate, 16% mortality rate; and 1% chance each of constant diarrhea, bowel obstruction, colostomy, and wound infection; the second surgery had a 80% success rate as well, but a 20% mortality rate Most participants selected a higher mortality rate over possible complications from surgery Many cited the trade-off between survival and survival with complications; while others simply stated the difference in mortality was not large enough to alter their choice

31. Early Research Early research into psychosocial adjustment among Ostomy patients focused on general psychosocial domains and partner reaction (Gloeckner, 1983; MacDonald & Anderson, 1984; Oades-Souther & Olbrisch, 1984; Follick, Smith, & Turk, 1984) Partner Reactions (Gloeckner, 1983) Research affirmed the partner/spouse as the key to adjustment to ostomy surgery Majority of spouses reacted positively 30% had a “fear of hurting me” Social Stigma (MacDonald & Anderson, 1984) Highest levels of perceived stigma were felt among those who were younger and those who were less healthy Most rated Self-Consciousness and Lowered Physical Attractiveness as ‘definitely’ an issue Overall, 37% said they felt worse after Ostomy surgery Adjustment (Oades-Souther & Olbrisch, 1984) Health Employment Social Activities Sexual Adjustment Marital/Emotional Adjustment

32. Recent Research Research demonstrates that although current ostomates rate the utility of their ostomy highly, former and non-ostomates rate them rather low (Smith et al, 2006) Utility ratings are calculated as the perceived impact a given condition would have on Quality of Life (QOL) High ratings indicate a small negative impact on QOL Research in this field finds a generalized discrepancy between the general public’s rating of a medical condition when compared to those with the medical condition (Smith et al, 2006) Former ostomates may assume that people with disabilities are much less happy and assume that, therefore, they must have been less happy as well

33. Disgust and Stigma Defined Stigma (Link & Phelan, 2001) “When stigma is explicitly defined, many authors quote Goffman’s definition of stigma as an “attribute that is deeply discrediting” and that reduces the bearer “from a whole and usual person to a tainted, discounted one” (Goffman 1963, p. 3).” (Link & Phelan, 2001) Disgust (Rozin & Fallon, 1987; Olatunji & Sawchuk, 2005) Disgust can be thought of as an evolutionary function of avoiding contaminants (Rozin & Fallon, 1987; Olatunji & Sawchuk, 2005) Disgust involves everything from facial expressions displaying disgust to behavioral avoidance of potential contaminants

34. Specific Disgust Concerns for Persons with an Ostomy Based on domains of disgust, persons living with an ostomy may experience elevated disgust sensitivity due to these factors (Smith, Loewenstein, Rozin, Sherriff, & Ubel, 2007) : The exit of feces from the body in an unusual location The lack of control of the time of exit The complexities of emptying and replacing the appliance (more complex and more in the visual domain than the usual anal cleansing process) The enhanced risk of noise and leakage Persons with an Ostomy may also be concerned about eliciting a disgust response from others

35. Sensitivity to Disgust and Stigma Although disgust and stigma may not directly influence adjustment to ostomy surgery, research has demonstrated that a person’s sensitivity to stigma and disgust does directly impact their adjustment (Smith et al, 2007) Smith et al (2007) demonstrated that general disgust sensitivity was negatively correlated with Ostomy Life Adjustment Additionally, it was found that feeling stigmatized was positively correlated with disgust sensitivity Those in the non-patient sample who demonstrated higher disgust sensitivity indicated lowered feelings of comfort with close contact with an Ostomate This research demonstrates that the environment of a person with an Ostomy does have a significant impact on a person’s adjustment; however, their personal feelings about an Ostomy or the specific disgust related traits can have an equally powerful impact

36. Scene #4 Once a person adjusts to the impact of an Ostomy in their immediate environment (dealing with leaks and gas; reactions of loved ones) they then must adjust to various other environments In this scene we emphasize the importance of the WOCN recognizing the sensitive nature of discussing sensitive and potentially embarrassing issues related to Ostomy surgery

37. Ostomy Patients Perceptions of Quality of Care The research is lacking in this department One study (Persson, Gustavsson, Hellstrom, Lappas, & Hulten, 2005) found that Ostomy patients were overall dissatisfied with the communication of lab results and Ostomy specific information from their providers Most were especially dissatisfied with their inability to discuss other non-medical issues such as sexuality This was one study that was conducted in Sweden and is not intended to be an indictment of any kind

38. What should we do? It is not your responsibility to provide 1:1 psychotherapy to your ostomy patients It is not your job to prioritize psychosocial aspects above physical health We can: Offer to listen to the patient’s concerns Offer information and resources that include Ostomy support groups/associations, or referrals to counseling services Remember that an Ostomate is a person interacting with their natural environment, not a pouch with legs

39. Conclusion Ostomy patients do not experience the same level of societal stigma as other minority groups, but the interpersonal struggle and adjustment to ostomy surgery remains significant

40. References Amsterlaw, Jennifer, Zikmund-Fisher, Brian J., Fagerlin, Angela, Ubel, Peter A. (2006). Can avoidance of complications lead to biased healthcare decisions? Judgment and Decision Making, Vol. 1, 64-75. Follick, Michael J., Smith, Timothy W., & Turk, Dennis C. (1984). Psychosocial Adjustment Following Ostomy Surgery. Health Psychology, Vol. 3, 505-517. Gloeckner, Mary Reid. (1983). Partner Reaction Following Ostomy Surgery. Journal of Sex & Marital Therapy, Vol. 9, 182-190. MacDonald, L.D., Anderson, H.R. (1984). Stigma in patients with rectal cancer: a community study. Journal of Epidemiology and Community Health, Vol. 38, 284-290. Oades-Souther, Dennie, & Olbrisch, Mary Ellen. (1984). Psychological Adjustment to Ostomy Surgery. Rehabilitation Psychology, Vol. 29, 221-237. Persson, Eva, Gustavsson, Bengt, Hellstrom, Anna-Lena, Lappas, George, & Hulten, Leif. (2005). Ostomy Patients’ Perceptions of Quality of Care. Journal of Advanced Nursing, Vol. 49, 51-58. Rozin, Paul, & Fallon, April E. (1987). A Perspective on Disgust. Psychological Review, Vol. 94, 23-41. Smart, J. (2009). Disability, society, and the individual. Austin, TX: PRO-ED, Inc. Smith, Dylan M., Loewenstein, George, Rozin, Paul, Sherriff, Ryan L., Ubel, Peter A. (2007). Sensitivity to Disgust, Stigma, and Adjustment to Life with a Colostomy. Journal of Research in Personality, Vol. 41, 787-803. Smith, Dylan M., Sherriff, Ryan L., Damschroder, Laura, Loewenstein, George, Ubel, Peter A. (2006). Misremembering Colostomies? Former Patients Give Lower Utility Ratings Than Do Current Patients. Health Psychology, Vol. 25, 688-695. Olatunji, Bunmi O., & Sawchuk, Craig N. (2005). Disgust: Characteristic Features, Social Manifestations, and Clinical Implications. Journal of Social and Clinical Psychology, Vol. 24, 932-962. Research and Training Center on Independent Living, University of Kansas. (2008). Guidelines for reporting and writing about people with disabilities (7th Edition). Lawrence, KS: Author. Riggar, T.F., & Maki, D.R. (2004). Handbook of rehabilitation counseling. New York, NY: Springer Publishing Company, Inc.