INTEGRATING PEER SUPPORT WITH YOUR OSTOMY NURSING PRACTICE: BRIDGING THE GAP

Cindy Shephard BA, MSN, RN, CWOCN

OBJECTIVES

Review the impact of social media on patient education and peer support

Understand the role of the UOAA in the patient experience

Know how to incorporate your local UOAA affiliated support group (ASG) into your practice

Be familiar with the general process for establishing an ASG of the UOAA

ROLE OF THE OSTOMY NURSE

“It remains the most important function of the WOC nurse to provide instructions for self-care and encouragement and support to the person having ostomy surgery.”

“Patients should be provided with information on support services to facilitate their adaptation to a new ostomy including how to access ostomy support groups…(Level of Evidence: High)”

Miller, D., Pearsall, E., Johnston, D., Frecea, M., McKenzie, M., & The Ontario Provincial ERAS Enterostomal Therapy Nurse Network. (2017). Executive Summary: Enhanced recovery after surgery—Best practice guideline for care of patients with a fecal diversion, Journal of Wound Ostomy Continence Nursing, 44(1), 74-77.Wound, Ostomy and Continence Nurses Society, Carmel, J.E., Colwell, J.C., & Goldberg, M.T. (Eds.) (2016). Core curriculum: Ostomy management. Philadelphia: Wolters Kluwer.

EVIDENCE FOR PEER SUPPORT

Teens rely on peers (face-to-face or virtual) instead of health care professionals (Remember Erikson)

Positive impact on cystectomy adaptation: “The better the education, the better the adjustment” Multifaceted education—written, multimedia, online, peer support, referral to internet resources, effect of WOC nurse

Merandy, K. (2016). Factors related to adaptation to cystectomy with urinary diversion. Journal of Wound, Ostomy & Continence Nursing, 43(5), 499-508. doi: 10.1097/WON.0000000000000269Mohr, L. D., Hamilton, R. J. (2016). Adolescent perspectives following ostomy surgery: A grounded theory study. Journal of Wound, Ostomy & Continence Nursing, 43(5), 494–498. doi: 10.1097/WON.0000000000000257

PEER CONNECTIONS

Visitor

Support group

Discussion board

FaceBook, Twitter, etc.

YouTube

Bloghttps://www.veganostomy.ca

ONLINE /SOCIAL MEDIA

A few FaceBook Groups:The Real Ostomy Support Group Ostomy Support Group Ostomy Life and Support Stomawise Ostomy Support (SOS) Double Baggers Ostomy Support Group

http://www.crohnscolitisfoundation.org/living-with-crohns-colitis/find-a-support-group/

https://www.inspire.com/groups/ostomy/

http://www.ostomyland.com/ostomyland/

https://www.meetanostomate.org/index.php?page=home

https://www.veganostomy.ca

https://www.patientslikeme.com

Traveler’s Search

UTILIZATION

Facebook1 billion in 20122 billion as of June 2017

Twitter185 million in 2012328 million as of June 2017

YouTube4 billion videos viewed DAILY

Nearly half of all patients with inflammatory bowel disease (IBD) use the Internet as a source of information for their disease

Mukewar, S., Mani, P., Wu, X., Lopez, R., & Shen, B. (2013). YouTube and inflammatory bowel disease. Journal of Crohns Colitis. 7(5), 392-402. doi: 10.1016/j.crohns.2012.07.011.

SOCIAL MEDIA

Effective way for health professionals and the general public to share knowledge

Increased accessibility

Peer-to-peer social/emotional support unlike traditional websites

DBs are an important factor in patient support, advantageous in translating knowledge to practice, create a sense of community

Improves chronic disease care when used to provide social, emotional, or experiential support

Antheunis, M.L., Tates, K., & Nieboer, T.E. (2013). Patients’ and health professionals’ use of social media in health care: Motives, barriers and expectations. Patient Education and Counseling, 92, 426-431. doi: 10.1016/j.pec.2013.06.020 Mairs, K., McNeil, H., McLeod, J., Prorok, J.C., & Stolee, P. (2013). Onliine strategies to facilitate health-related knowledge transfer: a systematic search and review. Health Information & Libraries Journal, 30(4), 261-277. doi: 10.1111/hir.12048

Moorhead, S.A., Hazlett, D.E., Harrison, L., Carroll, J.K., Irwin, A., & Hoving, C. (2013). A new dimension of health care: systematic review of the uses, benefits and limitations of social media for health communication. Journal of Medical Internet Research, 15(4), e85.Patel, R., Chang, T., Greysen, S.R., & Chopra, V. (2015). Social media use in chronic disease: A systematic review and novel taxonomy. The American Journal of Medicine, 128(12), 1335-1350. doi: 10.1016/j.amjmed.2015.06.015

SOCIAL MEDIA

Wide variation in quality of information

Most not written by health care professionalsTrust/quality control

Risk that information may not be correctly applied

Information overload AND incomplete information

May deter patient from seeking care

No correlation between quality of information and mean number of YouTube views https://www.veganostomy.ca/busting-ibd-misinformation/

Antheunis, M.L., Tates, K., & Nieboer, T.E. (2013). Patients’ and health professionals’ use of social media in health care: Motives, barriers and expectations. Patient Education and Counseling, 92, 426-431. doi: 10.1016/j.pec.2013.06.020 Chandler Finn, P. (2014). Promoting smoking cessation in ambulatory care. AACN Viewpoint, 36(4), 4-7.Fenton, A., & Panay, N. (2013). Social media and health. Climacteric, 16, 609-610. doi: 10.3109/13697I37.2013.850964

MacLeod, M.G., Hoppe, D.J., Simunovic, N., Bhandari, M., Philippon, M.J., & Ayeni, O.R. (2015). YouTube as an information source for Femoroacetabular impingement: A systematic review of video content. Arthroscopy: The Journal of Arthroscopic and Related Surgery, 31(1), 136-142.Moorhead, S.A., Hazlett, D.E., Harrison, L., Carroll, J.K., Irwin, A., & Hoving, C. (2013). A new dimension of health care: systematic review of the uses, benefits and limitations of social media for health communication. Journal of Medical Internet Research, 15(4), e85.

SOCIAL MEDIA

Impact on certain population groups

Relative effectiveness of different applications

Longer-term impact

Standardized mechanisms to monitor quality and reliability

Consequences for confidentiality and privacy

Moorhead, S.A., Hazlett, D.E., Harrison, L., Carroll, J.K., Irwin, A., & Hoving, C. (2013). A new dimension of health care: systematic review of the uses, benefits and limitations of social media for health communication. Journal of Medical Internet Research, 15(4), e85.

BACKGROUND

The Mount Sinai Hospital, New York 1950First conference of the United Ostomy Association (UOA), Los Angeles 1963

Two primary functions:Psychological: reassurance and understanding from other ostomates before and after the operation; advice with how to deal with oneself and others.

Educational: instructions on the details of stoma management; information for surgeons on the proper location and other details of fashioning a stoma; information to the public on the existence and needs of ostomates.Note: ET nurses supplemented and eventually replaced some functions of the UOA.

United Ostomy Associations of America, 2005

Lyons, A.S. (2001). Ileostomy and colostomy support groups. Mount Sinai Journal of Medicine, 68(2), 110.

Mission:

The United Ostomy Associations of America, Inc., promotes quality of life for people with ostomies and continent diversions through information, support, advocacy and collaboration.

501(c)(3) nonprofit organization

300+ affiliated support groups

member of the International Ostomy Association

http://www.ostomy.org/Membership.html

Join the local ASG or join as an individual

WHAT DOES UOAA OFFER ITS MEMBERS?

Online resource

New patient guidesPhoenix magazine

Moderated discussion boardsLocal support groups / Virtual support groupRegional and national conferences

Political advocacy

“Because none of us is as

loud as all of us.”

LOCAL GROUPS

#296 Greater Richmond Virginia

#304 Fishersville Virginia#342 Charlottesville Virginia

#368 Dover (Bayhealth)

#383 Metropolitan Maryland

#412 Frederick Area Ostomy Support Group

#029 Metropolitan Washington

#065 Northern Virginia#095 Anne Arundel County

#114 Shenandoah Valley

#145 Greater Baltimore Ostomy Association

#170 Wilmington Delaware Ostomy Association

#145 GBOA TIMELINE

Nov 2014—Baltimore Ostomy Association closes

Jun 2015—Planning

Oct 2015—First Meeting of GBOA

Sep 2016—Officers elected, EIN obtained

Oct 2016—ASG Bylaws signed, 501(c)(3) status approved

Mar 2017—Bank Account, $20 annual dues

Elect officersSign by-lawsObtain EIN (Form SS-4)Request inclusion in group ruling of 501(c)(3) statusOpen bank accountPay annual affiliation feeFile Form 990-N annuallyPublicize meetings

http://www.ostomy.org/ASG_in_a_Box.html

STEP BY STEP

AFFILIATED SUPPORT GROUP

Acceptance of UOAA’s Constitution, agreement to support UOAA’s mission, programs and activities, and, IF group coverage is elected under UOAA’s 501(c)(3) Charity Status, adherence to the IRS mandated provisions (usually just Form 990-N e-Postcard). The group will need its own Employer Identification Number (EIN).Payment of the Annual Affiliation Fee, currently $2.50 per member. The Minimum Affiliation Fee is $30.00. Voting rights: In UOAA elections, each affiliated group has as many votes as the number of members for which it has paid an Annual Affiliation Fee (e.g., a group that reports 50 members has 50 votes). A group that pays the Minimum Affiliation Fee has 12 votes.

Agreement to encourage support group members to subscribe to UOAA’s magazine, The Phoenix.Provision to UOAA of an e-mail address where communications to the support group can be sent.

Agreement to have an active patient “Visiting Program”.

Agreement that upon dissolution of the group it will give any remaining funds in its treasury to a viable 501(c)(3) charity/s, with strong preference to UOAA or to other organizations that provide support to ostomates.

GBOA MEETINGS

Oct 2015 — OstoBeauties Kick-off

Feb 2016 — Recipes for Prevention and Management of Peristomal SkinApr 2016 — Tips and Tricks Sharing/Small Group Discussions

Jun 2016 — Ironman Triathlete/Ostomate

Sep 2016 — Ostomy Products Fair

Dec 2016 — You and Your Ostomy: Navigating the Holiday BuffetMar 2017 — Your Ostomy: Here, There and Everywhere (Travel)

May 2017 — Intimacy after Ostomy, and How to Tell Others

Jul 2017 — Parastomal Hernia Prevention and Management

Sep 2017 — Ostomy Products Fair

Developing YOUR “Script”

1.Why I have an ostomy…2.How it came to be…3.Explain what an ostomy means

Remember to assess where your patient is now as far as knowledge

Provide a list of safe internet links for information

Introduce the UOAA and its missionProvide contact information for the ASG nearest to your patient

Attend an ASG meeting near you

Offer to be a guest speaker

WHERE DO WE GO?

–Albert Schweitzer

“Sometimes our light goes out but is blown into flame by another human

being. Each of us owes deepest thanks to those who have rekindled this light.”

REFERENCES

Antheunis, M.L., Tates, K., & Nieboer, T.E. (2013). Patients’ and health professionals’ use of social media in health care: Motives, barriers and expectations. Patient Education and Counseling, 92, 426-431. doi: 10.1016/j.pec.2013.06.020Chandler Finn, P. (2014). Promoting smoking cessation in ambulatory care. AACN Viewpoint, 36(4), 4-7.

Fenton, A., & Panay, N. (2013). Social media and health. Climacteric, 16, 609-610. doi: 10.3109/13697I37.2013.850964Knowles, S.R., Tribbick, D., Connell, W.R., Castle, D., Salzberg, M., & Kamm, M.A.(2017). Exploration of health status, illness perceptions, coping strategies, psychological morbidity, and quality of life in Individuals with fecal ostomies. Journal of Wound, Ostomy & Continence Nursing, 44(1), 69-73.Lyons, A.S. (2001). Ileostomy and colostomy support groups. Mount Sinai Journal of Medicine, 68(2), 110.Mairs, K., McNeil, H., McLeod, J., Prorok, J.C., & Stolee, P. (2013). Onliine strategies to facilitate health-related knowledge transfer: a systematic search and review. Health Information & Libraries Journal, 30(4), 261-277. doi: 10.1111/hir.12048MacLeod, M.G., Hoppe, D.J., Simunovic, N., Bhandari, M., Philippon, M.J., & Ayeni, O.R. (2015). YouTube as an information source for Femoroacetabular impingement: A systematic review of video content. Arthroscopy: The Journal of Arthroscopic and Related Surgery, 31(1), 136-142.

Merandy, K. (2016). Factors related to adaptation to cystectomy with urinary diversion. Journal of Wound, Ostomy & Continence Nursing, 43(5), 499-508. doi: 10.1097/WON.0000000000000269Miller, D., Pearsall, E., Johnston, D., Frecea, M., McKenzie, M., & The Ontario Provincial ERAS Enterostomal Therapy Nurse Network. (2017). Executive Summary: Enhanced recovery after surgery—Best practice guideline for care of patients with a fecal diversion, Journal of Wound Ostomy Continence Nursing, 44(1), 74-77.Mohr, L. D., Hamilton, R. J. (2016). Adolescent perspectives following ostomy surgery: A grounded theory study. Journal of Wound, Ostomy & Continence Nursing, 43(5), 494–498. doi: 10.1097/WON.0000000000000257

Moorhead, S.A., Hazlett, D.E., Harrison, L., Carroll, J.K., Irwin, A., & Hoving, C. (2013). A new dimension of health care: systematic review of the uses, benefits and limitations of social media for health communication. Journal of Medical Internet Research, 15(4), e85.Mukewar, S., Mani, P., Wu, X., Lopez, R., & Shen, B. (2013). YouTube and inflammatory bowel disease. Journal of Crohns Colitis. 7(5), 392-402. doi: 10.1016/j.crohns.2012.07.011.

Patel, R., Chang, T., Greysen, S.R., & Chopra, V. (2015). Social media use in chronic disease: A systematic review and novel taxonomy. The American Journal of Medicine, 128(12), 1335-1350. doi: 10.1016/j.amjmed.2015.06.01Timms, C., Forton, D., & Poulis, A. (2014). Social media use in patients with inflammatory bowel disease and chronic viral hepatitis. Clinical Medicine, 14(2), 215. doi: 10.7861/clinmedicine.14-2-215.Wound, Ostomy and Continence Nurses Society, Carmel, J.E., Colwell, J.C., & Goldberg, M.T. (Eds.) (2016). Core curriculum: Ostomy management. Philadelphia: Wolters Kluwer.