Improving Engagement Stigma Phabc2009
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Improving Engagement Stigma Phabc2009

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Presentation at PHABC Public Health Reducing Health Inequities Conference, Vancouver, British Columbia, Canada.

Presentation at PHABC Public Health Reducing Health Inequities Conference, Vancouver, British Columbia, Canada.

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  • Canadian Conference on Men's Health, 2007, Gallant PW
  • Canadian Conference on Men's Health, 2007, Gallant PW
  • Stakeholders including health leaders, developers of health policy, MWED must advocate for an increased collaboration of resources across sectors to “enable the many versus the few” to develop effective strategies aimed at addressing health inequities, including gaps in prevention, early detection and earlier treatment for males with eating disorders. Review and reduce existing systemic biases (e.g. female screening tools) that deter males from being treated. Health authorities and communities may consider sponsoring forms of support groups and pilot programs to gain increased expertise in understanding males with eating disorders while continuing to work with these same males to provide better future services.  
  • The process of conducting research using elements of community engagement may have contributed towards an increased desire for understanding between those MWED needing help and some of the providers of health services.

Improving Engagement Stigma Phabc2009 Improving Engagement Stigma Phabc2009 Presentation Transcript

  • Improving Engagement of Stigmatized Stakeholders: Access to Healthcare Experiences for 10 BC Males with Eating Disorders Paul W. Gallant, CHE, PhD(c), MHK 1,2 C. Laird Birmingham, MD, MHSc 1 Peter R.E. Crocker, PhD 1 1 The University of British Columbia & 2 Gallant HealthWorks Presented at: Public Health Association of British Columbia “ Action Towards Reducing Health Inequities” Conference November 23, 2009 Gallant, Birmingham & Crocker
  • Acknowledgements/Questions
    • Dr. Vicki Smye, UBC, Nursing
    • Providence Health Care
    • Dr. Jerry Singleton, Dalhousie
    • Participants (MWED)
    • PHSA & Provincial Eating Disorders Advisory Committee
    • Questions/Comments/Networking
    • Email: paul@GallantHealthWorks.com
    • Follow me on Twitter “HealthworksBC”
    • Looking Glass Foundation
    • Children’s Hospital & Kelty Resource Centre
    • NEDIC
    • UBC Faculty of Education: Pacific Century Graduate Scholarship, Dean’s Special Scholarship & Paezold Fellowship
    • http: www.linkedin.com/in/paulwgallant
    • THANK YOU!
    Gallant, Birmingham & Crocker
  • Context
    • Men are relatively ignored in the study of eating disorders (Birmingham & Beumont, 2005)
    • Treatment is predominately female oriented
    • Stigma: a women’s illness (Andersen et al 2000)
    • “ At least” 10%-15% of cases are predicted in men
    • The number of MWED is “underreported and rising”
    • Recent studies suggest MWED may be higher than 25% (Woodside et al 2001; Hudson et al 2007)
    Gallant, Birmingham & Crocker
  • Context
    • More than 300 years ago Dr. Richard Morton documented the first cited case of a male with anorexia nervosa
    • Few to no known services in Canada are specifically designed to meet the needs of MWED and male patients are often doubly disadvantaged ; males with eating disorders were:
      • less likely to receive care or treatment and
      • for those males who did receive care, they were likely to receive less care than their female counterparts.
    Gallant, Birmingham & Crocker
  • Gallant, Birmingham & Crocker VANCOUVER - For years, anorexia and bulimia were considered strictly female disorders. But doctors say men are getting caught up in the quest for the perfect body, and they may have fewer treatment options. Recent studies suggest up to 16 per cent of those treated for anorexia are male, and doctors suspect the number may be higher for bulimia. For David Hurst of Vancouver, food was his worst enemy for nearly 30 years. He exercised constantly, ate next to nothing and developed a serious drug problem. "I was always checking myself," said Hurst. "'OK, am I thin enough?' Pinch for the inch." Eating disorder specialist Dr. Laird Birmingham said the chance of getting an eating disorder, increases with societal pressures. More men with eating disorders seek treatment programs Last Updated Fri, 07 Feb 2003 10:47:13 EST
  • Another male who has struggled with an eating disorder Gallant, Birmingham & Crocker For David Beckwermert, president and CEO of a Calgary oil and gas company, suffered from bulimia. He only disclosed his condition to a doctor when he underwent a colonoscopy because of rectal bleeding.
  • Why do this Research?
    • Eating disorders are potentially devastating illness that
    • have the highest mortality rate of all mental illness.
    • Access to care remains at the forefront of Canada's healthcare policy debate.
    • Difficulty accessing healthcare may delay treatment, increase the risk of complications related to late diagnosis, and reduce quality of life (QOL).
    • QOL is valued by individuals, researchers, and is of clinical significance in many settings, including mental health
    • Many females with eating disorders are known to describe a poor QOL which is correlated with increasing distress and more severe ED symptoms
    • Few studies examine QOL of MWED or access to healthcare experiences of males with eating disorders
    Gallant, Birmingham & Crocker
  • “ My Life as a Male Anorexic” Michael Krasnow, Age 26 in 1995, Weight 75lbs, 5-foot, nine-inches In 1995 “ Michael published a book on Male Anorexia and had the courage to explicitly share his story. He was thoughtful, courageous, good, and kind to all who knew him.” Michael died shortly after his book was published. Gallant, Birmingham & Crocker
  • Other public males who have struggled with eating disorders… Gallant, Birmingham & Crocker When Dennis Quaid confessed he had suffered a long, difficult and secret bout with "manorexia," there was a collective sigh of relief from specialists working in the world of men and eating disorders.A man, and a famous one at that, had finally come forward. Denise Ryan, Vancouver Sun Thursday, March 15, 2007 Ron Saxen, fashion model gained 70 pounds in six months. In his new book, The Good Eater chronicles his secret struggle to overcome binge eating disorder (BED). A recent Harvard Medical School study recognized binge eating as the most widespread eating disorder in the United States. http://www.ronsaxen.com/inthenews.htm
  • 1 st Author’s Experiences with MWED
    • St. Paul’s, Operations Leader/clinician (Provincial eating disorders adult program)
    • Retrospective Research on MWED
    • Bridgepoint, Sask: Facilitator/ Observer
    • Men’s Health Education Group for MWED
    • Posters/discussions at 3 EDRS (2006-2008)
    • Oral presentations at Canadian Conference on Men’s Health, Richmond Public Forum
    • Videoconference PEDAC
    • Children’s and Adult Eating Disorder’s teams
    Gallant, Birmingham & Crocker
  • The Purpose of the Study
    • To better understand the
    • health care access experiences
    • and the quality of life (QOL) for
    • males with eating disorders
    • (MWED).
    Gallant, Birmingham & Crocker
  • Stigma
    • “ Stigma is conceptualized as an attribute that is deeply discrediting, making the person carrying it both different from others and of a less desirable type” (Goffman, 1986, p. 3).
    • Numerous authors report that stigma is found to affect those with mental illness and to affect those who have eating disorders. (Byrne, 2000; Link & Phelan, 2006)
    • Additional authors suggest that stigma disrupts health by causing stress and causing reluctance amid patients trying to find treatment, for fear of being labeled (Link & Phelan, 2006).
    Gallant, Birmingham & Crocker
  • Stigma
    • In males and females the systemic denial of the existence of eating disorders as a legitimate medical problem does little to encourage treatment seeking among individuals who are already ambivalent about recovery or seeking help.
    • The false belief that eating disorders are self-inflicted illnesses also has created a negative stigma for any person struggling with this illness.
    • The possibility that women with eating disorders may stigmatize males with eating disorders, who already frequently feel isolated in therapeutic sessions with women, may further complicate help-seeking for MWED.
    Gallant, Birmingham & Crocker
  • Former Deputy Prime Minister John Prescott
    • “ confessed to suffering from the eating disorder bulimia.
    • He states that he suffered in misery and in silence for 10 years because of the shame of being a high-profile man with the illness.”
    • BBC 2008
    Gallant, Birmingham & Crocker Click link: http://news.bbc.co.uk/2/hi/uk_news/politics/7357008.stm
  • QOL
    • Enhancing quality of life has been a goal for individuals, communities, nations, and the world (Costanza et al, 2006).
    • Quality of life, personal happiness with life or satisfaction with life should be a central part of mental health versus the presence or absence of psychiatric symptoms or disease (Frisch, 1994).
    Gallant, Birmingham & Crocker
  • How do boys and men deal with distress?
    • Pollack (1998) states that around the time of adolescence boys experience many societal pressure to conform to masculinity ideals.
    • Boys and men are socialized to hide feelings, hide pain, and may feel shameful about talking to others about their problems (Freidman, 2007).
    • Some boys internalize their distress turning their feelings instead against themselves through self-blame and believing that hiding their feelings is more appropriate that sharing their feelings.
    Gallant, Birmingham & Crocker
  • Method
    • A community sample of 10 males with an eating disorder completed:
      • a demographic self-report
      • 3 questionnaires
      • participated in one focus group, and
      • participated in one follow-up interview
    • Data were interpreted using qualitative description and critical theory approaches
    • Descriptive statistics and major themes were reported
    Gallant, Birmingham & Crocker
  • Questionnaires
    • Demographic self-report
    • The Coping Inventory for Stressful Situations
    • The Quality of Life Inventory asks you to list any problems that get in the way of satisfaction with areas of life such as health and relationships.
    • The Eating Disorder’s Inventory asks you rate from “never” to “always” on questions such as Do you eat more than you should"?
    Gallant, Birmingham & Crocker
  • Method
    • We used a qualitative description approach that was enhanced by quantitative self-report measures.
    • Qualitative descriptive studies are typically diverse and have as their purpose a complete summary of events in the everyday language of the participants.
    Gallant, Birmingham & Crocker
  • Critical Theory
    • The research also follows a critical theory framework with regards to gender and inequities within stigmatized individuals - males with eating disorders (MWED).
    Gallant, Birmingham & Crocker
  • Critical Theory
    • seeks to evaluate and modify the social order and not only to study and understand (Patton, 2002, p. 131-132).
    • focuses on how injustice shapes peoples' experiences and understanding.
    • is concerned with issues of authority and fairness and the ways that matters of social institutions and cultural dynamics interact to build a social system.
    Gallant, Birmingham & Crocker
  • Community Engagement (CE) Gallant, Birmingham & Crocker CE Practice Application to Our Study of MWED Inform the Community
    • Newspaper articles sharing experiences of MWED
    • Posters in community settings to recruit MWED
    • Public forum to discuss MWED and research
    • Radio interviews about supporting MWED
    Consult on Draft Plans
    • Expert input from research and clinical peers
    • 1:1 consultation interview with a MWED
    • Videoconference to health service providers
    Involve Stakeholders in Plan
    • Focus groups & follow-up interviews
    • Assist with recruiting participants
    • Open dialogue with staff/system
    Collaborate
    • Define system limitations
    • Network of service providers & non-profits
    • Community shared decision making
    Empower
    • Participants were given opportunities to identify issues & solutions
    • Participants observed they were not the only MWED (by attending focus group)
  • Results Gallant, Birmingham & Crocker “ I was told males are not seen here… and there isn’t anything for males with eating disorders” (Interview MWED) “ For the first time I saw another man with an eating disorder. I saw that I was not the only one” (Focus Group Member) “ The eating disorders’ resource centre was helpful…I also have a good relationship with my MD for 12 years…he didn’t know about my eating disorder” (Interview MWED) “ I was told males are not seen here… and there isn’t anything for males with eating disorders” (Interview MWED) “ For the first time I saw another man with an eating disorder. I saw that I was not the only one” (Focus Group Member) “ The eating disorders’ resource centre was helpful…I also have a good relationship with my MD for 12 years…he didn’t know about my eating disorder” (Interview MWED) “ I was told males are not seen here… and there isn’t anything for males with eating disorders” (Interview MWED) “ For the first time I saw another man with an eating disorder. I saw that I was not the only one” (Focus Group Member) “ The eating disorders’ resource centre was helpful…I also have a good relationship with my MD for 12 years…he didn’t know about my eating disorder” (Interview MWED) “ I was told males are not seen here… and there isn’t anything for males with eating disorders” (Interview MWED) “ For the first time I saw another man with an eating disorder. I saw that I was not the only one” (Focus Group Member) “ The eating disorders’ resource centre was helpful…I also have a good relationship with my MD for 12 years…he didn’t know about my eating disorder” (Interview MWED) “ The eating disorders’ resource centre was helpful…I also have a good relationship with my MD for 12 years…he didn’t know about my eating disorder” (Interview MWED)
  • Quality of Life Inventory Findings Gallant, Birmingham & Crocker
  • Gallant, Birmingham & Crocker Results: Summary Table of Additional Health and Demographic Data Measure Finding Mean Age of Eating Disorder Onset 19 years Mean Age at Time of Study 45 years Mean Duration of Eating Disorder 26 years Age Range at Time of Study 25-74 years Age of Onset Range 8-40 years *Sexuality 1 Bisexual,4 Straight,*5 Gay Employment status 6 Unemployed,3 Working,1 Retired Desire for Treatment All rated High/Very High Desire for Recovery All rated High/Very High Received Treatment N=4 Teased as a Child N=6 Childhood Abuse N=3 Married or in a relationship N=2 Exercises/control weight or shape N=6 Additional mental health diag. N=5 Poor Libido N=4 HIV + N=3
  • Gallant, Birmingham & Crocker Themes Participant (P) Comments Social Isolation “ There is not much to talk about regarding friends. My friend today is my wife. We keep to ourselves and our small community . I don ’ t get along with my relatives. ” Poverty “ I live on disability in sub poverty and one in one of the richest countries in the world . Poverty is a nice, genius word for a lot of social ills that continue to be ignored or neglected. ” Community Pressure to Fit in “ There is pressure in the gay community around body image . The ideal gay is young, athletic, and spelt. As I am older now, 74 years, there is less pressure to meet others ideals. ” “ I was a chubby child and teased all the time in school because of my looks. ” Stigma “ When I spoke about my concerns the doctor told me men can ’ t have eating disorders. ” “ I don ’ t look for eating disorders stuff because it is not for men. I can ’ t relate to the stuff about women. The male body and female body are different. How my body reacts to my eating disorder such as sex drive, relates to being a man. ” Therapeutic Alliance “ I have worked with many doctors/specialists. One thing I find was working with someone who does not understand eating disorders. [It] can be very damaging and even a negative experience. ”
  • Satisfaction with treatment (N=4)
    • numerous struggles in the primary screening and identification of their eating disorder, being accepted into treatment
    • discomfort being the only male in eating disorder groups or programs
    • MWED voiced their frustration with the absence of services and the lack of knowledge of some health care practitioners when seeking help for their eating disorders in the past.
    Gallant, Birmingham & Crocker
  • Benefits of Community Engagement Approach
    • Community engagement aided in participant recruitment, added to the awareness of this study and promoted opportunities for participants to identify issues and solutions pertaining to health care access.
    Gallant, Birmingham & Crocker
  • Results Summary
    • mostly low to very low QOL
    • social isolation
    • emotional coping
    • value spirituality
    • many are unemployed
    • value the therapeutic alliance
    • experience stigma (multiple issues)
    • community pressure to fit in
    • all were wanting treatment but faced numerous barriers
    Gallant, Birmingham & Crocker
  • Value of Community Engagement Practices Gallant, Birmingham & Crocker Adapted from Weinstein et al, 2006
  • Recommendations
    • Stakeholders including health leaders, developers of health policy, MWED must advocate for an increased collaboration of resources across sectors to better address health inequities, including gaps in prevention, early detection and treatment for MWED.
    • Review and reduce existing systemic biases (e.g. female screening tools) that deter males from being treated.
    • Health authorities and communities need to embrace support groups and pilot programs to gain increased expertise in understanding MWED while continuing to work with these same males to provide better future services.  
    Gallant, Birmingham & Crocker
  • Recommendation
    • 4. Use Community Engagement Practices
    • Community engagement appears promising for working with stigmatized individuals; to not only better understand a problem, but to help support individuals’ efforts in improving services.
    Gallant, Birmingham & Crocker
  • More Immediate Wins
    • Increase awareness amongst health providers, family, friends, colleagues, media
    • Listen to MWED and share their messages
    • Be inclusive – display information that includes males
    • Be conscious of the messages you give others
    Gallant, Birmingham & Crocker
  • Summary
    • Health inequities exist for males with eating disorders
    • Increased opportunities for MWED to access resources are needed
    Gallant, Birmingham & Crocker
  • In Conclusion
    • What began as an access to healthcare study of males' with eating disorders also examined males' experiences of social isolation, coping, additional illnesses, unemployment, age, and other determinants of health, as the challenges facing the participants became more apparent.
    • Many of the determinants of health fall outside of the exclusive control of the health sector, and require the health sector to work in collaboration with other sectors of society and government to become more effective in addressing inequities that influence wellbeing.
    Gallant, Birmingham & Crocker
  • Selected References (contact primary author for complete references)
    • Andersen, A.E., Cohn, L., & Holbrook, R. (2000). Making weight: Men’s conflicts with food, weight, shape, and appearance . Carlsbad, CA: Gurze Books.
    • Birmingham, C.L., & Beumont, P. (2004). Medical Management of Eating Disorders. Cambridge University.
    • Carlat, D.J., Camargo, C.A., & Herzog, D.B. (1997). Eating disorders in males: a report on 135 patients. American Journal of Psychiatry, 154, 1127-1132.
    • Creswell, J. W. (1998). Five different qualitative studies.  Qualitative Inquiry and research design: Choosing among five traditions. Thousand Oaks, CA: Sage Publications.
    • Frisch, M.B., Cornell, J., Villanueva, M., & Retzlaff, P.J. (1992). Clinical validation of the Quality of Life Inventory. A measure of life satisfaction for use in treatment planning and outcome assessment. Psychological Assessment, 4, 92-101.
    • Gallant , P.W. (2008). Males’ body image and eating disorders: a rising concern. Bulletin. Toronto. National Eating Disorders Information Centre. Invited article. Weblink: http://www.slideshare.net/paulwgallant/Vol-23-No-5-Male-Body-ImageIncreasing-Concern
    • Gallant, P.W., Birmingham, C.L., Crocker, P.R.E. & Harbottle, E.J. (2007). Men with eating disorders: treatment enhancement and coping strategies. Abstract published in the Scientific Program and Abstracts, Annual Meeting, Eating Disorders Research Society, Pittsburgh.
    • Gallant, P.W., Birmingham, C.L., Gritzner, S., and Crocker, P.R.E. (2006). Understanding treatment reluctance and coping strategies in males with eating disorders. Eating Disorders Research Society (EDRS). Scientific Program and Abstracts, Annual Meeting in Cairns, Australia.
    • Health Canada. A Report on Mental Illnesses in Canada. Ottawa, Canada 2002, pg 88.
    • Hudson, JI, Pope, HG, & Kessler, RC (2007). The prevalence and correlates of eating disorders in the National Comorbidity Survey Replication. Biol Psychiatry 61(3), 348-358.
    • Lewinsohn, P.M., Seeley, J.R., Moerk, K.C., & Striegel-Moore, R. H. (2002). Gender differences in eating disorder symptoms in young adults. The International Journal of Eating Disorders, 32, 426-440.
    • Link, B.G. and Phelan, J.C. (2006). Stigma and its public health implications. Lancet, 367:9509, 528-529.
    • Lock, J. D. (2009). Trying to fit square pegs in round holes: Eating disorders in males. Journal of Adolescent Health,44(2), 99-100
    • Muise, A.M.; Stein, D.G; Arbess, G. (2003). Eating disorders in adolescent boys: a review of the adolescent and young adult literature. Journal of Adolescent Health, 33 : 427-435.
    • Padierna, A., Quintana, J.M., Arfostegui, I., Gonzalez, N., & Horcajo, M.J. (2002). Changes in health related quality of life among patients treated for eating disorders. Quality of Life Research, 11: 545-552.
    • Province of Ontario (2006). North West Local Health Integration Network. Proposed Community Engagement Strategy: A Framework for Discussion.
    • Sandelowski (2000). "Whatever happened to qualitative description?" Research in Nursing & Health, 23(4): 334-40.
    • Spillane, N.S., Boerner, L.M., Anderson, K.G., & Smith, G.T. (2004). Comparability of the eating disorder lnventory-2 between women and men. Assessment, 11, 85-93.
    • Tylka, T. L., & Subich, L. M. (2002). A preliminary investigation of the eating disorders continuum with men. Journal of Counseling Psychology, 49, 273-279.
    • Wallerstein (2006). What is the evidence on effectiveness of empowerment to improve health? Copenhagen, WHO, Health Evidence Network report; http://www.euro.who.int/Document/E88086.pdf
    • Weinstein, Plumb, & Brawer (2006). Community engagement of men. Primary Care Clinics in Office Practice. 33: 247-259.
    • Woodside, D. B. (2002). Eating disorders in men: An overview. Healthy Weight Journal, 16, 52 .
    • Woodside, D. B., Kohn, M., & Kerr, A. (1998). Patterns of relapse and recovery following intensive treatment for eating disorders: A qualitative description. Eating Disorders, 6(3), 231.
    •  
    Gallant, Birmingham & Crocker