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49% of Respondents Report they Received Inadequate Information and Communication From their Provider at the Hospital

By Leslie Riggle Miller, M.A.

My name is Leslie Miller and I am a 25-year cancer survivor and a former ostomate. I had a partial colectomy at age sixteen in 1993 resulting from a cancerous tumor attached to the rectum. I was given a colostomy, for which I had never heard of before I woke up with one! Nine-reconstructive surgeries later, I received a takedown (reversal of colostomy) in 1997. Now, three lives later I am doctoral student at the University of Oklahoma in the Department of Sociology. My primary research area is Medical Sociology.

I am excited to share with you some preliminary results of a very important study on the lives of ostomates. I began this research project in the summer of 2017 called Peoples’ Experiences With Pouches (1.) (P.E.W.P.) Study. I am interested in the difficulties ostomates face in their everyday lives, as well as the level of supportive care they receive in current medical practice. Long-term goals include improving hospital processes and nurse training with respect to ostomy care and instruction.

Background: An important component of our healthcare system is when patients and providers meet and interact together. During this interaction, patients are able to explain their ailments and tell their story, and providers are able to provide care, instruction, and diagnoses. There are positive and negative outcomes for patients based on this interaction, such as patients feeling heard, respected and cared for, but also there can be patient dissatisfaction, lack of trust, and misdiagnoses. Effective communication from providers is not only critical for all patients, but possibly more so for patients who receive a life-changing surgery, such as an ostomy.

The communication from providers when ostomates first receive their appliance is critical. Provider communication not only needs to be effective for ostomates’ ability to go home and take care of their appliance, but also it needs to be efficient given the short turnaround time in release from the hospital. As such, in my study, I examine provider communication and information when ostomates first receive their appliance.

Study Background and Results: Currently, there are 391 ostomates from the U.S. and abroad included in the study. 89% reside in the U.S. with 11% residing outside of the U.S. (predominantly from the United Kingdom and Canada).

The research questions that I have addressed are based on ostomates’ initial experiences at the hospital when they first receive their ostomy. The research question that I will address in this post is, “Do ostomates receive adequate information and communication from providers while at the hospital?” The answer to this question is “no.” I found that almost half (49%) of the ostomates felt that they received inadequate information and communication from their provider at the hospital. Below are the areas of provider care that ostomates reported that they either did not receive or an inadequacy in care that they experienced:

  1. Attitude. The provider said something that hurt the patient’s feelings or acted in a way that dissatisfied the patient, such as the provider was arrogant or rude.
  2. Ostomy Nurse. The patient wanted to see an ostomy-specific nurse sooner than they did or have follow-up appointments with an ostomy nurse but did not get to.
  3. Providers Lacked Knowledge. Patients felt that providers were not educated enough about ostomy care or were lacking in their knowledge on ostomies.
  4. Products. Patients were not told that there were other products on the market that may work better for their type of stoma or situation.
  5. Preoperative Information. Patients did not receive pre-op information or wanted more preparation before surgery.
  6. Fixing Issues. Patients were not told how to fix issues that arose once at home.
  7. Supervise Pouch Change. Patient wanted to be supervised on how to change the pouch or more practice with changing it with an ostomy nurse or more practice changing it, in general, before going home but did not get to.
  8. Wrong Information. Patients were told the wrong information from providers.
  9. Missing Information. Patients were not told all of the information that they needed or wanted on how to care for their ostomy or other options available.
  10. Lacked Support Information. Patient wanted to be told about ostomy support groups or links to support information or meet with a current ostomate, but did not receive this.
  11. Lacked Emotional Support. Patient did not receive any emotional support from their provider and they wanted to.
  12. Questions. Patients had questions that were not answered at the hospital, or they wanted to call to ask questions.
  13. Hurried/Dismissed. Patients felt like the nurse was hurried, or the patient did not receive overall basic care, making them feel as if they were dismissed.

A majority of ostomates felt that they did not receive all of the information that they wanted or needed, with lacking product information as the second highest category for inadequacy.

Additionally, I examined whether provider communication and information were better or worse for ostomates who received their ostomy years ago versus more recently. The years of ostomy surgery ranged from having had surgery in 1953 to 2017. I found that the further back in years the ostomate had their surgery, the more likely they were to report adequate information and communication. This finding leaves us with additional questions, such as whether the quality of hospital provider care has decreased over time? What is driving this decrease in adequate information and communication for ostomates? I plan on determining the answers to these questions in future studies.

Closing Remarks: The main takeaway is that there is much work to be done with regard to ostomy care when people first receive their pouch. We hope our study (and future studies on this topic) will help in this endeavor. Finally, I encourage all of you to be active participants in your medical encounters when you meet with providers. It is important to ask questions and have an open dialog with your provider. The UOAA offers vast resources for new and seasoned ostomates. In particular, the UOAA has a “patient bill of rights” so that ostomates have the tools they need to advocate for their care. Please visit https://www.ostomy.org/bill-of-rights/ to see this great resource. You are welcome to reach out to me if you have any questions

1. Miller, Leslie Riggle and B. Mitchell Peck. 2018. Peoples’ Experiences With Pouches (P.E.W.P.) Study: Examining Whether Ostomates Receive Adequate Information from Hospital Providers. Presented at the Oklahoma Sociological Association Annual Meeting, Norman, Oklahoma, November 2017

Leslie Riggle Miller, M.A. is a former ostomate and a doctoral student at the University of Oklahoma in the Department of Sociology. 

Ostomate or Person Living with an Ostomy?

“Labels are for soup cans.” ~ Grist Mill Road by Christopher Yates

by Jeanine Gleba, UOAA Advocacy Manager with Keagan Lynggard, UOAA Advocacy Committee Member

The UOAA Advocacy Committee produces many educational resources and self-advocacy tools for the benefit of you; you being a person living with an ostomy or continent diversion. Our dilemma has been what to call you or how to refer to you within the context of advocating, educating, and supporting, as you are the subject of what we write about. Sometimes we call you “a person living with an ostomy or continent diversion”. That takes nine words to describe one aspect of your life and this becomes very difficult and cumbersome to write over and over again in a single advocacy or educational document. There is however, a definite trend on social media and with online bloggers to use the word “ostomate” when referring to you, and the community of people who live with an ostomy.

As a national organization that supports all people living with an ostomy it’s crucial that we are sensitive and choose our words wisely so that they are acceptable to our community. Ostomy surgery is already a delicate topic that is often associated with “bathroom talk”, a topic that already has enough of its own societal taboos. Recently our Committee set out to gather survey data to hear from YOU, the people that our work impacts to identify the more acceptable or best term to use in our advocacy written materials and presentations concerning ostomy awareness and education.

Is this a label?

Our surveys certainly sparked an interesting debate. Many responders assumed that we wanted to “label” our community in a derogatory way versus our intention which was to simply look for a word to identify our medical demographic and represent the people we impact. As I read the comments from our responders and thought about what we were looking for, it made me wonder if this is how “labels” are born? Do they arise when people search for a simple and easy to use term to describe something? What happens when a label sticks and there is a negative stigma or insensitivity to those with a particular condition? As I pondered these questions and continued to review further comments, I realized that many people do prefer a simple word (or label) to identify their medical condition. It helps some people feel a sense of belonging and unity within a unique group. So I’m not sure what we would even call the word: a “term” or a “name” or a “label”? It’s also important to stress that although we were looking for a simpler non-offensive term it wasn’t meant to completely and irrevocably replace a “person living with an ostomy”. In fact, the definition of the word “ostomate” is simply a person who has undergone an ostomy.

And the preferred term is…

Here are the results of our surveys:

Total Votes: 331
34% (113 votes) Person with an ostomy
61% (201 votes) Ostomate
5% (17 votes) Other

191 Votes via Facebook
37% (71 votes) Person with an Ostomy
63% (120 votes) Ostomate

23 Votes via Twitter
48% (11 votes) Person with an ostomy
52% (12) Ostomate

117 Responses via Survey Monkey
27% (31 votes) Person with an Ostomy
59% (69 votes) Ostomate
14% (17 votes) Other

Does age affect preference?

In the Survey Monkey survey we asked a few more questions to gain a better understanding of the responders, such as gender, age, or whether their ostomy was temporary or permanent. 98% of the responders had a permanent ostomy with over 80% being older than 55 years of age. Of this older population 62% were female and 38% were male. Of interest the males were 50-50 in their selection of preferred term. Whereas, only 17% of females preferred “person with living with an ostomy”. If this had been a science experiment, and I had to develop an initial hypothesis, given the social trends on the internet, I would have predicted that the term “ostomate” was going to be more favorable for the younger generation. Our results proved this wrong!

 

We also provided an opportunity for people to list a specific “other” term that they would prefer and only three had a specific response like “Packin’ a Pouch”. For the majority of those who selected “other” they did not list another term but rather said it was actually ok to use “ostomate” or they didn’t care, which in turn would increase the # of who prefer “ostomate”. Nineteen percent (3/16 responses) did not want any term.

For the question “For those who do not like the term ostomate, why?” these were some of the reasons why:

· Because I am more than my ostomy or my ostomy doesn’t define me
· Labels what/who you are
· People won’t know what ostomate means or it always needs more explanation

Until you walk in someone else’s shoes…

Here’s what people were saying:

“I don’t want to be defined by my ostomy. Giving me a title/name defines me. I am a mother, a wife, a nurse, and a friend. Those things define me. Not my ostomy. While my ostomy is a part of my life, it does not define my life. PLEASE get away from the term “ostomate.”

“I prefer to focus on the positive – I am LIVING with an ostomy. Ostomate sounds harsh.”

“I also like “Person living with an ostomy”, but Ostomate is easier. What I really don’t like is use of the word “bag” which many, many people, ostomates, nurses and doctors continue to use. It’s very upsetting!” (Check out the Vegan Ostomy blog on this topic.)

“This term is commonly thought to be someone with a bowel ostomy. Mine is an urostomy. I’d like to see a term implies all ostomies.”

“Living with an ostomy sounds better to me and denotes the fact the ostomy gives a person additional life.”

“It labels people (similar to how one would not want to be referred to as the amputee, the diabetic, the bipolar, etc.)”

“I am not a “joiner” and do not plan on meeting others with similar conditions.”

Of notable interest 16/55 people answered this question with a response that they actually like the term ostomate.

In general our overall analysis found that although we did receive a few “neither” or “either” comments followed with the pattern of commentary along the lines of “my ostomy does not define me”, the vast majority preferred the term “ostomate”. We also received comments that support the idea that those who prefer the term ostomate are those familiar with the literal definition of ostomate, those who are involved/active within the ostomy community, or those who have really embraced this aspect of their life. This sense of community was evident in the survey question showing over 70% of responders belong to some sort of support community either online or an ostomy support group.

There is no right answer.

In conclusion, the Advocacy Committee has decided that in most cases we will continue to use the terminology “person living with an ostomy”, which is less “defining”, in our materials; however, given the results of the survey we will also now more freely and confidently include the term “ostomate” in order to simplify a document or when the term is more suitable for our advocacy purposes. I believe in our society of political correctness, we will never be able to please everyone, but we should always aspire to do our best, be respectful of all and try not to stir the pot by adding salt to wounds that are in the process of healing.

Thank you again to all those who participated in the survey and contributed to helping us gather this valuable information.