Response Rate and Sample Characteristics
A total of 216 participants in the randomized study received the 6-month survey (106 in the OSMT Group and 110 in the UC Group). A total of 118 completed the survey question on the greatest challenges, with 55 (47%) responding from the OSMT Group, and 63 (53%) responding from the UC Group (Table 1). Distributions of age and gender were similar across both groups. Over 65% of the participants from both groups were 12 months or less from their cancer surgery (Table 1). In the OSMT Group, the 55 participants contributed 187 coded comments with an average of 3.4 comments per participant, and the UC Group of 63 contributed 255 coded comments with an average of 4 comments per participant (Table 1).
Distribution of sample characteristics by colostomy, urostomy and ileostomy revealed similar numbers of participants with a colostomy or a urostomy (44 and 45), and 24 with an ileostomy (Table 2). Only 5 participants had more than one stoma, four of them being females. A gender difference occurred in the urostomy group, with 73% being males. Age analysis indicated a middle-aged population with ileostomies (Mean = 56.5) compared to an older group with urostomies (Mean = 73.3). Colorectal was the most common type of cancer for those with a colostomy or ileostomy, and urological cancer was the most common for those with a urostomy. Participants with a colostomy contributed 154 comments with an average of 3.5 comments per participant, those with an ileostomy contributed 109 comments with an average of 4.5 comments per participant and those with a urostomy contributed 142 comments with an average of 3.1 comments per respondent.
When examining the distribution of comments on Quality of Life Domains by randomized groups, Ostomy-Specific Issues and the Social Issues were by far the most common challenges experienced by both OSMT and UC groups. The next most common domain for the OSMT group was the Physical Domain, followed by the Psychological and Spiritual Domains. Differences in the UC Group showed the Spiritual Domain next followed by Physical. Healthcare Issues had the fewest comments from both groups.
The distribution of comments on Quality-of-Life Domains by Type of Ostomy showed differences by types of ostomies. For the Colostomy group, the Social Well Being Domain had the highest number of comments followed by Ostomy Specific and Physical Domains. Psychological Domain and Health Care Issues were next with the fewest comments related to Spiritual Well Being. For the Ileostomy Group, Ostomy Specific and then Social Well Being had the most comments followed by equal number of comments in Physical Well Being., Spiritual, and Health Care Issues. The Psychological Domain had the least number of comments. For the Urostomy Group, Ostomy Specific Issues had the most comments followed by Social and Spiritual Well Being. Equal number of comments were found for the Physical and Psychological Domains. The fewest comments for the Urostomy Group occurred in Health Care Issues. For participants with more than one stoma, comments were most common in the Social Well Being Domain, followed by Spiritual Well Being. Similar numbers of comments occurred in the Physical, Psychological, Ostomy Specific Issues, and Health Care Issues. Differences in the distribution provides information on what content can take priority when guiding specific ostomy patients through the post recovery.
Themes developed within each of the Domain provided additional information on the specific challenges identified by the participants. The Physical Well Being Domain included four themes (Table 3). Comments related to the Bowel Function Theme included problems with gas, noise, odor, constipation, and diarrhea. Comments on the Urinary Function Theme included difficulty regulating, effects of foods, incontinence, and painful urination. Physical Problems included rebuilding strength and increasing activity, as well as decreases in physical activities, pain, strength, and the ability to walk. The Nutrition and Hydration Theme included the need to increase fluid intake, adapting healthy eating, and fears of the effects of specific foods. Examples of quotes for each group are presented in Table 3.
The Psychological Well Being Domain included five themes: Depression, Fear/ Anxiety, Positive Attitude, Negative Attitude, and Feelings of Guilt. Specific quotes are presented in Table 3.
Challenges coded in the Social Well Being Domain were organized under six themes and included Relationship Issues, Sexuality and Intimacy Problems, Going Out in Public, Work/Finances, Positive Support, and Negative Support. Specific comments from each group are presented in Table 3.
The Spiritual Well Being Domain was organized under four themes and included Spiritual Activities, Positive Changes, Negative Changes, and Reason to be Alive. Specific comments are presented in Table 3.
The comments in the Ostomy-Specific Issues Domain were coded into 6 themes: Ostomy Care, Positive and Negative Support, Positive and Negative Education, and Ostomy Reversal. Examples from participants in each group are presented in Table 4.
The Healthcare Issues Domain was created to include challenges related to cancer and non-cancer medical care and treatment. Themes included Post-Operative and Treatment Related Issues, and Cancer. Examples of specific challenges are presented in Table 4.
To visualize the content of the greatest challenges identified by the participants in the OSMT Group and the UC Group, datasets composed of the themes and frequencies of each theme were created. Figure 1 provides a Word Cloud comparison of the themes in the OSMT and UC Groups. Post-op and Treatment-related issues were common in both groups. Physical Problems, Going out in Public, Fear/Anxiety and Bowel Function were identified more often in the OSMT Group and Going out in Public and Positive Attitude were more frequent in the UC Group.
Comments were then analyzed based on the type of ostomy using Word Cloud. Post-operative and treatment related issues were most frequent in the Colostomy group, and less so in the Ileostomy group, and infrequent in the Urostomy group (Figure 2). The Urostomy group identified the challenge Positive Support most frequently. Bowel Function was dominant in the Colostomy group, less so in the Ileostomy group, and not an identified challenge for those with urostomies. Going out in public was a frequent challenge for those with ileostomies, less so for those with colostomies, and infrequent for the Urostomy group. Fear/Anxiety were comments found in the Urostomy group, and in the Colostomy Group, and less in the Ileostomy group.