‘That gave me a lot of comfort, that he would ask my opinion about how we wanted to talk about this’: A qualitative analysis of clinical communication experiences of ostomy patients

Abstract

Objectives

The purpose of this study was to investigate the communication challenges and successes that people with ostomies experienced during their healthcare encounters.

Design

We conducted semistructured interviews of people with ostomies. Interviews focused on important social situations and health communication strategies for managing these situations. We transcribed interviews and coded them to create themes.

Participants

Participants were eligible to participate if they were above the age of 18 and have had an ostomy for at least a year. 27 people participated in the study.

Setting

The study was conducted in a university setting.

Results

Interviews with ostomates surfaced several themes related to ostomate needs. Participants benefited from communication that was open, thorough and had a positive outlook on ostomies. Participants found patient–clinician communication to be challenging when there was a lack of knowledge surrounding ostomy care, communication was unclear or inadequate, and when clinicians had a negative outlook on ostomies.

Conclusions

Findings from this project are intended to amplify existing patient and clinician education materials and to inform the creation of a communication guide specifically for the ostomy context.

STRENGTHS AND LIMITATIONS OF THIS STUDY.

• Semistructured interviews were conducted and manually coded and analysed using a phronetic iterative approach.

• Key informants were integral to the collection and analysis of social experiences.

• Semistructured interviews allowed participants to direct the interview based on their unique experiences.

• The use of key informants may introduce sampling bias with lend to participants who are more confident and comfortable discussing difficult topics.

Introduction

According to the United Ostomy Associations of America,¹ approximately one million people in the USA are living with an ostomy. An ostomy is an intestinal diversion through an opening in the skin, called a stoma, that is designed and surgically created to reroute and eliminate body waste.² The ostomy community is regarded as an underserved patient population, and thus scholars, clinicians and ostomates have called for more research to understand their experiences.³ There is an increasing interest in understanding how best to care for ostomy patients to promote not just their recovery and physiological functioning but also their self-efficacy, self-management skills, and ultimately, their successful adjustment to life with an ostomy.⁴

Life with an ostomy has numerous potential effects on quality of life.^4–6 Ostomates may struggle with self-image and self-confidence, interpersonal relationships and physical intimacy.^{5 7 8} Public and social situations can be complicated as ostomates learn to cope with new routines, noises, smells and questions; they may experience embarrassment and uncertainty throughout.^{9 10} Navigating the healthcare system often becomes an additional stressor, with many healthcare professionals not knowing much about ostomies.¹¹

Purpose of this study

Adaptation to life with an ostomy will depend on several factors, such as whether the ostomy was unexpected; whether there are persistent issues with bowel function; and whether the person can remain employed.⁷ Greater adaptation has been observed among patients who have better preoperative and postoperative ostomy care and guidance; less uncertainty; more social support from loved ones and from peers; and greater independence and self-management.^12–14 Communication with clinicians is an important yet understudied correlate of adjustment to an ostomy. The purpose of the present study was to investigate communication successes and challenges that ostomy patients experienced with their clinicians.

Patient-centred cancer communication

This study was designed to examine communication difficulties and communication successes and guided by an existing conceptualisation of high-quality clinical communication in the cancer context. Epstein and Street offered a framework for patient-centred communication in cancer care.¹⁵ High-quality communication functions to do the following: foster patient–clinician relationships, exchange information, respond to patients’ emotions, manage patients’ uncertainty, make decisions and enable patient self-management. Communication with clinicians can have proximal, intermediate and long-term outcomes for patient health, quality of life and survival.¹⁵

Optimal care for ostomates is built around extensive communication in preoperative, perioperative and postoperative settings.¹ High-quality communication involves talking patients through the immediate outcomes of the surgery to show how the ostomy was constructed and how it will fit with their pouching system. Patient-centred ostomy care also entails a great deal of postoperative patient counselling so that people can become more independent in their self-management without feeling abandoned and bewildered.^{8 16}

Improving ostomate–clinician communication through applied research

The American Cancer Society’s guide to ‘Living with an Ostomy’ indicates that patients may need to advocate for themselves, including bringing their own ostomy supplies to the hospital, and asking that their chart detail the type of ostomy they have and which procedures may need to be avoided. The guide advises, ‘Do not assume that all hospital staff know a lot about ostomies. Depending on the type of ostomy you have, you may need to do some explaining and teaching’.² Although this is sound advice, it is incomplete.

The present investigation was needed to take this advice further, to explicate the features of high-quality and low-quality clinical communication from the perspective of ostomy patients, so that we can design educational materials that build on successes and correct or prevent failures. When patients are better informed and able to engage in self-advocacy, their health outcomes and satisfaction with care improve.¹⁷ This project was designed to inform the development of communication guides that will educate patients and clinicians about some communication challenges they might face and some strategies for navigating those situations. We posed the following research question:

RQ: What communication challenges and successes do ostomy patients experience with clinicians?

Methods

These data were gathered as part of a larger parent project investigating the communication needs, challenges and successes of ostomates. Qualitative, semistructured interviews and interpretive approaches to data collection and analysis were used in this study because of their ability to yield nuanced understandings of people’s subjective experiences with important health communication processes.¹⁸

Patient and public involvement

This study was developed based on needs ostomates expressed during clinical interactions with one of the study’s authors (see ‘Statement of Research Team Positionality’ for author information) and informed by previous literature suggesting a need for more communication-based educational materials for people with ostomies.³ While patients were not involved with the conceptualisation or initial design of the study, the research question was designed to allow participant voices to guide the direction of the project and inform the interpretation of study results. This study used multiple recruitment methods and relied heavily on snowball sampling. By engaging in snowball sampling, people with ostomies were actively involved in the recruitment process of the study. For instance, one participant had a large following on social media and encouraged others to participate using their online platform. In addition, participant responses to interview questions helped guide changes and additions to subsequent interviews. These changes and additions emerged through conversations during interviews, particularly when a participant would answer a question and then ask what other participants said. For instance, after describing an experience about asking for a second opinion, one participant asked what other participants said about this. The research team then included a question about asking for second opinions in the interview protocol for upcoming interviews. This study is part of a larger research project that aims to create a communication guide for people with ostomies. The results of this study will be shared with people with ostomies who wish to advise on the content, and eventually publicly distributed to support groups, clinics and non-profit organisations that assist people with ostomies.

Data collection and analysis

A semistructured interviewing approach was used to allow variability in discussion, reflect the unique experience of participants and allow changes to interviews as needed.¹⁹ The interview protocol focused on salient communication experiences for individuals with ostomies. For instance, the interviewer asked things such as ‘What were some of your concerns about living with an ostomy?’ and ‘Can you describe one of the difficult interactions you have had since receiving your ostomy?’.

Interviews were held on Zoom or by phone and lasted on average 53 min. Interviews were recorded and transcribed through a secure AI transcription service and created 443 pages of single-spaced data. After listening to audio files, the researchers edited and cleaned the transcripts for minor errors detected from the transcription service. Beyond transcription errors, the transcripts were left verbatim. Identifiable information was removed from notable quotes chosen to be used in the manuscript and participants were given a pseudonym. Participants were informed of these procedures and all participants agreed, except for one participant who requested that their real name be used rather than receiving a pseudonym.

Data were coded manually by the first and second authors using Atlas.ti software for data management and organisation. Data were analysed using a phronetic iterative approach.¹⁹ With this approach, data are gathered and analysed while continuously consulting the existing scholarly literature, published patient advocacy materials, and clinical knowledge base and using them to guide the labelling and sensemaking of findings as they emerge. Throughout the course of the interviews, the research team had weekly discussions regarding emergent findings and to revise the interview protocol as needed. These meetings also served as a space to discuss analytic memos that were created as transcriptions were reviewed.²⁰ Two of the research team members engaged in primary cycle coding, followed by a discussion and comparison of the first-level codes by the research team. After it was agreed on that the first-level codes accurately represented the data, secondary cycle coding was engaged in to group smaller codes into groups and explore recurring themes. The team determined that theoretical saturation occurred once no new codes emerged and the relationships between codes were firmly established.²¹ Examples of themes were discussed among the team and labels were assigned to organise the themes meaningfully.

Statement of research team positionality

The research team acknowledges the influence that individual bias and privilege have on research. All team members have been educated at the post-graduate level, including one author with an MD who is a colorectal surgeon, two authors who hold PhDs in communication and two PhD students. The first author, a PhD student studying interpersonal health communication, conducted the interviews. To help acclimate the interviewer to a new participant population, the research team held a practice interview to ensure that the interviewer was comfortable responding to situations that may be emotionally taxing or difficult for participants. The research team provided feedback and made efforts to ensure the interviewer was prepared and had the knowledge of strategies to build rapport with participants and minimise any influence their position as a researcher had on participants.²² To ensure transparency with participants, the interviewer disclosed during interviews that they did not live with an ostomy. As interviews took place, the interviewer would ask clarifying questions about medical terminology or procedures that they were unfamiliar with. For instance, when one participant described an experience related to a proctocolectomy, the interviewer responded, ‘I’m not familiar with this procedure. Can you tell me more about it?’ As interviews continued, the interviewer reflected on the interdependent nature of the interviewing process and their responsibility to the community to ensure that participants were treated as experts in their own lives.²³ By taking care to ensure participant trust, the researchers aim to uphold the value of transparency and sincerity within qualitative research by demonstrating high regard for the human experience.²²

Participant recruitment

Participants were recruited through social media posts, distribution of research information in clinical practices and support groups, and through snowball sampling. To participate, individuals were required to be over the age of 18 and have had, or currently have, their ostomy for at least 1 year. Interested individuals were able to fill out an interest survey or email the project’s email address listed on the recruitment materials. Individuals who expressed interest in the project were sent a copy of the consent form to review and asked two questions prior to scheduling an interview: Tell me a little bit about yourself and What brand of ostomy supplies do you currently use?. These questions were asked to ensure that participants were legitimate (ie, human participants rather than bots) and had an ostomy. At this point, some individuals chose not to respond to the information and questions and were removed from the list of potential participants. Individuals who responded to both questions were scheduled for an interview.

Consent

Informed consent was administered by the interviewer (BL). Documentation of informed consent was waived. Respondents were sent a copy of the consent form ahead of the scheduled interview so that they could review it. The consent form communicated that interview data would be presented and published, but no personally identifying information would be included. Before any recording began, the interviewer read the informed consent document and asked participants if they had any questions, if they still wished to participate, and if they consented to the recording.

Results

Recruitment yielded 27 individuals ranging in age from 28 to 91 (M=55, SD=18). Participants self-reported having their ostomy from 1 year to 34 years, with the average participant having their ostomy for almost 7 years (M=6.98, SD=6.98). Most participants self-identified as female (n=19). They described themselves as white (70%), multiracial (7%), African American (4%) and Hispanic (4%); the remaining participants did not disclose their race or ethnicity (15%). Not all participants were asked during the interview where they lived, however, those who disclosed this information resided in a variety of locations including locations in the USA such as Alaska, Arizona, Maryland, Missouri, Ohio, Oklahoma, New Hampshire, New York, Texas, Washington and Vermont. Some participants resided outside of the USA, with Brazil, England, Mexico and Pakistan being represented.

Communication successes

Many participants had good experiences with the clinicians on their healthcare team. They described successful communication in terms of thorough, excellent patient education; working as a team; direct and open communication; and conversations that promoted positive attitudes and emotions about ostomies.

Excellent patient education

Participants in our study emphasised that good communication was key to helping them learn how to manage their ostomy. They appreciated clinicians who spent extensive time teaching them, engaging in creative problem solving and delivering hands-on training. This included communication with a range of clinicians.

Thorough guidance

For many patients, wound, ostomy and continence nurses (WOCNs) were the first to thoroughly help them understand how to perform bag changes, test out different products and manage their ostomy care themselves. One patient described the initial education on ostomy care that they received from hospital staff prior to discharge as ‘horrible’, noting that their uncertainty about their ostomy care continued for over 6 months after their surgery until they finally met their WOCN. Aaron explained the relief he felt after meeting his WOCN, stating:

I finally found a really good ostomy nurse here who gave me a lot of information on what to do, what to try, how to get [supplies], how to make it fit the best way possible. That made all the difference in the world.

Creative problem solving

One feature of excellent patient education was a willingness on the part of the clinician to try out creative solutions. Again, this involved a great deal of time invested in the patient’s care, as they experimented with different equipment to find the best options. Christina described this by saying, ‘[One WOCN] was very creative, and she’s like, ‘Oh, there’s this brand I heard about. Let’s try that and see’… She was in the trenches with me trying to figure out what was going to work.’

Hands-on training

Several interview responses described how valuable it was to receive opportunities to care for their ostomy under the supervision of their clinicians. WOCNs were revered as ‘brilliant’ for suggesting that patients take new supplies home ‘just to try it’, Leah said. Aaron described the care given to him by his WOCN as ‘unbelievable’:

You would change the ostomy while she was there, and she could watch all the stuff that you were doing, then give you advice as you were actually doing it, then come back in several days to check up on progress…That was huge.

Working as a team

Participants recognised that having a team of people to support them was invaluable in its contributions to their care. Many considered their WOCNs central to their team. The relationships they built gave patients confidence that they did not have to figure everything out on their own after discharge. Diana stated, ‘You need a team… people with different areas of expertise to be on your team advising you and helping you figure your path back to good health…I say I have my ‘ostomy posse.’

Direct, open communication

Participants described valuing honest, straightforward communication from their healthcare practitioners. Carol described how much she valued this quality in her WOCN, saying, ‘She really valued open communication, where others did not’. Even in instances when this honesty meant delivering hard news, patients appreciated the direct nature of their clinicians, as opposed to some who tiptoed around the topic of ostomies. As Marco explained, ‘My surgeon was great…he was straight up and said, …‘I can tell you this fantasy story about doing a resection, but because it’s most of your colon, the best route to go is just to take it all out.’ This open communication between Marco and his doctor made it easier for him to make the decision to get an ostomy.

Positive attitudes towards ostomies

Participants in our sample reported that the quality of communication with clinicians was affected by how the clinicians seemed to manage discussions regarding what life with an ostomy would entail. Interview responses compared communication that was hopeful, encouraging and positive against communication that was tinged with fear and negativity. A successful encounter was described by Barbara, who appreciated WOCNs that approached ostomies with a positive outlook: ‘They speak highly of patients who have ostomies, and they encourage a very positive attitude for both the staff and patients’. Marco continued this sentiment by saying that his surgeon’s positivity ‘alleviated my, most of my concerns, and [consequently] I had surgery.’

Communication challenges

Ostomates shared several stories that reflected challenging communication with clinicians. These situations pertained to the content and process of the interactions. Many of them were in direct opposition to the successes outlined above. Challenges typically took the form of inadequate patient education; unclear communication; and messages that framed ostomies as fundamentally undesirable. Finally, it also became apparent that people struggled during healthcare encounters where clinicians showed little understanding of how to care for a patient with an ostomy.

Inadequate patient education

One very straightforward area of dissatisfaction with communication was when patients did not receive the comprehensive, standardised education that they needed to manage their ostomy after receiving it. As opposed to the excellent patient education described elsewhere in the results, these patients felt as though they needed more information, more time with a specialised healthcare practitioner and more interactive training: ‘I got guidance and education at the hospital but there really wasn’t that much to it. I could’ve used a little more time with it, since it was the last day [before I was discharged],’ said Loretta.

Unclear communication

One communication challenge that came up was when clinicians were not being as clear as patients felt they needed them to be, either when explaining or gathering information. One participant, Carla, explained how a question like, ‘How often do you change your bag?’ could be misinterpreted. She says, ‘I usually empty it when I’m going pee. So it doesn’t actually mean that the bag is full. And so the number of times they empty the bag is not a good proxy for how active the stoma is.’ In this case, the participant found that a lack of context and precision in the question made it difficult to understand how to exchange the necessary information.

Framing ostomies as fundamentally undesirable

In contrast to successful experiences where participants heard positive descriptions of what an ostomy could do for their quality of life, some clinicians presented an ostomy as an undesirable and bleak option. Diana talked about a clinician who seemed to want to dissuade her from considering an ostomy. She says, ‘He told me about people who had, like, fistulas coming out of their thighs…I mean, he really painted the most horrendous situation…I was kind of traumatized driving home from that meeting.’ Despite many patients’ testimonials on how beneficial their WOCNs had been to their care, one participant, who both works in ostomy care and has an ostomy, talked about witnessing a negative interaction between a WOCN and patient. Barbara says, ‘I once had a patient with an ostomy that I was helping…And the nurse [was] having a very negative attitude about ostomies in general. And then trying to help that nurse understand that ostomies are not a worst-case scenario.’ These examples are indicative of the perspective that clinicians’ attitudes towards ostomies are powerful.

Lack of clinician knowledge surrounding ostomies

Participants found that a lack of understanding about ostomies was a major barrier to communication and care with clinicians beyond their ostomy care team. For instance, one participant described an interaction with an unspecified clinician who wanted to do an anal exam despite the participant having had surgery to remove the entire large intestine and anus. Carla said, ‘I was like, ‘I don’t have [an anus]. We can’t do that.’ And she was like, ‘Oh, it’ll just be quick.’ And I’m just like, ‘No, no, but like, I just don’t, I don’t have an anus, you can’t do that.’ Another participant, Loretta, said, ‘My urologist didn’t seem to know much about it. In fact, the next time I went to see him…one of his first things was, ‘Can I see it?’ He’s never seen one.’ These recollections illustrate the lack of knowledge surrounding ostomies and the surprise that patients may feel when they are asked to show their ostomy. In a situation where the patient is not meant to be the expert, the patient is tasked with educating the clinician about ostomies.

Successes among the challenges

The work that participants did to educate clinicians was not entirely unsatisfying. Some ostomates in our sample found a sense of accomplishment, purpose, goodwill or at least humour when taking charge of challenging situations and facilitating the communication themselves. For instance, Vicky states, ‘My room nurse had no clue, never worked on an ostomy her entire life. I had to train in the middle of being doped up. I’m like, ‘Bring the rest of the staff in that hasn’t been trained.’ Lucy shared a similar example of teaching nurses by saying, ‘When I’m in the hospital…I get all these towels and I let them do it…It’s kind of entertaining. They go through at least 15 towels trying to stop the ileostomy especially from spreading all over like a geyser.’ Finally, one participant described the overwhelming desire to educate clinicians and take her expertise to social media to bridge the knowledge gap. Carol said, ‘I started this in March of 2021: Instead of having a blog…I go on Twitter. And every day, I write something about an ostomy. Things that I’ve learned, things that I do to make my ostomy work for me.’ Carol has dedicated over 2 years of knowledge and time to educate and communicate with healthcare professionals of all different specialties, specifically noting practitioners both inside and outside of gastrointestinal care.

Discussion and conclusion

This study supports and expands previous work that has found that navigating healthcare can be an additional stressor for people with ostomies.¹¹ Respondents reported both successes and challenges, and discussed healthcare encounters that were with ostomy experts as well as with clinicians who were unfamiliar with ostomies. When describing successes in communication, participants recalled when clinicians dedicated time to educate them about their ostomy, including giving them thorough guidance on life with an ostomy, trialling creative solutions for their ostomy care, and providing the patients with hands-on training to reduce uncertainty about caring for their ostomy. Participants also described the benefits of perceiving that their ostomy care was a team effort. Patients valued direct, open communication and clinicians’ positive attitudes towards ostomies. The successes experienced by these participants demonstrate the value that comes from thorough preoperation and postoperation education.¹²

Previous work related to psychological adjustment for people with ostomies has suggested that a lack of professional and clinical guidance may contribute to lower quality of life and adjustment.²⁴ These participants emphasised the impact of a clinician’s role in patient well-being and noted challenges they have experienced in communication with their clinicians, such as failure to provide adequate education about ostomies, unclear communication from their clinicians, the framing of ostomies as fundamentally undesirable and the lack of clinician knowledge surrounding ostomies. Lastly, participants noted instances when they were faced with challenges and chose to educate clinicians and advocate for themselves to make the communication successful. These challenges echo calls for more patient and clinician education and more access to ostomy experts to facilitate easier adjustment to an ostomy postoperation.²⁵ Many of the themes gathered from these interviews yielded theoretical and practical implications for how ostomy patient care and patient–clinician communication can be improved. Notably, these findings can be used in educational materials for both clinicians and people with ostomies to provide better resources for clinicians and encourage better adjustment and preparation for people with ostomies who may need assistance navigating communication with a clinician.

This study is not without limitations. Patients who struggle coping with their ostomy may be less likely to agree to interview opportunities such as these. Future research might triangulate these findings with data from online forums, where people may feel comfortable engaging in these discussions with fellow ostomates. In addition, these participants represented a wide range of ages and experiences with ostomies. Although individuals expressed unique challenges with their ostomy related to their age and gender, these experiences were not described in relation to their relationship with a clinician. Given previous work on the influence of age and gender on the experience with an ostomy,²⁶ future research should explore how everyday challenges might relate to or influence the patient–clinician relationship.

Application of findings

Given the impact that these interactions with clinicians have on patients, the findings of the present study suggest the need for trainings for clinicians focused on how to effectively communicate with ostomy patients in a way that improves patient care. This could include a variety of continuing medical education opportunities focused on health communication training. Such opportunities have demonstrated evidence of increased clinician knowledge and self-efficacy.^{27 28}

There is a clear opportunity to incorporate the lessons learnt from the present study into educational opportunities for ostomates, along with patient-facing materials that can facilitate more successful communication with healthcare practitioners. It is valuable to recognise patients as experts in their own long-term illnesses who can contribute meaningfully to the healthcare team,²⁹ especially when they have rare or poorly understood conditions and are more knowledgeable than some clinicians.³⁰ The results from this study could help to prepare patients to advocate successfully for themselves during healthcare encounters, which may empower them to feel more capable of navigating those situations and feel less mentally and emotionally taxed when they occur. An important next step will be to distill the findings of this study into evidence-based educational interventions.

Data availability statement

Data are available on reasonable request.

Ethics statements

Patient consent for publication

Consent obtained directly from patient(s).

Ethics approval

This study involves human participants but the University of Texas at Austin Institutional Review Board (Study 00002491) exempted this study. Participants gave informed consent to participate in the study before taking part.