“Living for Myself and Others”: The Role of an Ostomy Self-Help Group in Thailand in Providing Psychosocial Support

Abstract

The Thai ostomate self-help group is an informal association of people living with ostomy who come together with the goal of improving their quality of life and living conditions. This study aims to qualitatively explore the experiences of individuals with colostomy and their participation in a self-help group in Thailand. In-depth interviews were conducted with 30 individuals living with a permanent ostomy who had undergone ostomy surgery for colorectal cancer. Through engaging with the group, participants found ways to live for themselves and others. Information and support were shared in the form of positive stories that empowered participants to live a more normal life and participate in everyday activities. Moreover, group members found a sense of meaning and appreciation in devoting themselves to helping other members. These results enhance the understanding of the benefits of self-help groups in Thailand, and in turn raise question about the provision of psychosocial services for people living with ostomy in the Thai health care system.

Introduction

As a health intervention, self-help groups are widely used to cope with various health problems. A self-help group is a particular social space; a place for belonging, sharing, sheltering, resolving, conflict, fighting, and consoling (Adamsen & Rasmussen, 2001; Munn-Giddings & McVicar, 2007). Self-help groups consist of people who share the same experience, and in which group members provide mutual help and support to each other (Adamsen, 2002). Research suggests that self-help groups offer many beneficial outcomes, including improved adjustment, reduced psychiatric symptomatology, improved self-esteem, increased acceptance of the condition, and increased coping skills and life satisfaction (Matcham et al., 2014).

The positive benefits of involvement in self-help groups in oncological care have been widely recognized (Ziegler, Hill, et al., 2022; Ziegler, Nickel, et al., 2022). Participation in self-help groups can improve emotional states, reduce depression and anxiety, and improve the quality of life and marital relationships of cancer patients (Ikeuchi et al., 2022; Zabalegui et al., 2005); for example, women who participate in breast cancer groups feel that their group involvement is very helpful in providing emotional and informational support (Hu et al., 2019; Stang & Mittelmark, 2010). In addition, the self-help group also provides a sense of fellowship, mutual empathy, and care, as well as improved relationships with others (Dennis, 2003; Zhang et al., 2022). In Thailand, breast cancer patients undergoing chemotherapy found a sense of coherence through participating in a self-help group (Thadmala & Sangchart, 2012). Due to the psychosocial challenges associated with ostomy, the ostomate self-help group has also promoted the quality of life of participants (Byfield, 2020).

Notably, Kenderian et al. (2014) found that people living with an ostomy can experience psychosocial challenges that led to social isolation, sleep deprivation, financial concerns, and sexual dysfunction. Moreover, people living with ostomy felt less unattractive, have low negative self-esteem, and experience body image concerns (Salomé et al., 2014). Living with an ostomy can impact an individual’s mental well-being through feelings of embarrassment, anxiety, depression, loss of control, and alienation from oneself and others (Knowles et al., 2014).

As a result, knowing how to deal with one’s ostomy may help these individuals feel less worried about their everyday lives. Maleen et al. (2021) reported that the information needs of people with colorectal cancer include a need for non-medical information in relation to daily living and information on bodily changes that accompany colorectal cancer. This can include how to deal with the impacts of their bodily changes on participation in sports, leisure activities, and sexual relationships (Kaiser et al., 2021). Individuals participate in such groups to help normalize their illness and to seek experiential knowledge (Kittscha et al., 2024).

The present self-help group was founded for people living with an ostomy in Thailand who sought help coping with psychosocial challenges. Members have personally experienced the physical and psychological difficulties faced by people living with ostomy. The members usually contacted each other through messenger applications. Although the importance of self-help groups has been recognized in Thailand (Sukwatjanee et al., 2011; Ungphakorn & Sittitrai, 1994), ostomy self-help groups have not received specific investigation. The terms “support group” and “self-help group” tend to refer to different types of groups: self-help groups are often led by members who share the condition for which the group was formed, whereas support groups are often led by professional facilitators (Kurtz, 2017). For the purposes of this study, self-help groups are defined as “voluntary associations of persons who share common concerns or problems and who try to support and help each other at little or no cost” (Burlingame & Davies, 2002, p. 601). This study aims to qualitatively explore the experiences of individuals with colostomy and their participation in a self-help group in Thailand.

Methods

This study adopted a descriptive phenomenological approach to understand the realities and experiences of people living with an ostomy who participate in a self-help group. Descriptive phenomenology seeks to explore how the world appears to others and relates to the experiences or behaviors of subjects (Sundler et al., 2019), thus providing a description of the meaning of the lived experiences of a phenomenon (Öhlén & Friberg, 2023). Using a descriptive phenomenological approach, this study focuses on describing how people living with ostomy experienced their involvement in the ostomate self-help group. Importantly, in-depth interviews are the primary method of data collection in descriptive phenomenological inquiry.

A purposive sampling technique (Ahmad & Wilkins, 2024) was used to recruit participants who had undergone ostomy surgery for colorectal cancer. All participants were individuals with carcinoma who had received a permanent ostomy with the removal of the sphincter muscle. The inclusion criteria for this study were as follows: participants must have been living with an ostomy for more than 1 year following ostomy surgery due to colorectal cancer; were over 18 years of age; and had no clinical illness at the time of participation. Patients who were hospitalized were excluded from this study. The participants (30 patients) were recruited from an ostomy self-help group. Table 1 provides information about the sociodemographic characteristics of the participants.

Table 1.

Study Participant Characteristics (n = 30).

Demographic details	Number
Age
30–39	3
40–49	12
50–59	11
60–69	4
Religion
Buddhist	30
Sex
Male	16
Female	14
Marital status
Single	4
Married	19
Divorced	5
Widowed	2
Employment
Paid employment	23
Unemployed	6
Retired	1
Time after ostomy
1–2 years	9
2–3 years	10
>3 years	11

All participants had taken part in an ostomy self-help group in Thailand for more than 1 year. The number of participants was determined via a theoretical sampling technique, in which recruiting is stopped when little new data emerges, signifying data saturation (Patton, 2002).

Prior to the commencement of this study, ethical approval was obtained from the Research Ethics for Human Subjects, Thammasat University, Set 2 (043/2558). Informed consent was obtained from all participants before their inclusion in the study. Potential participants were provided with a full explanation of the study, the length of the interview, and the scope of questions. They were then asked to sign a consent form. Participants were assured that all data would be kept confidential; for this purpose, pseudonyms were used in both the encoding of data and the dissemination of the findings.

Data Collection

The interviews were held face-to-face at a place where the participant felt most comfortable. The participants often chose to be interviewed at coffee shops near to the hospital or at their own homes. The interviews were conducted in Thai to maintain, as much as possible, the subtleties and hidden meanings in the participants’ statements (Liamputtong, 2013). With the permission of the participants, the interviews were tape-recorded. Each interview lasted between 40 and 60 min. The participants were given gift cards as reimbursement for their time or travel. Incentives are necessary for sensitive research because they are a way to show respect for the time and knowledge of participants (Liamputtong, 2013). To build rapport, the researchers spent time with each participant before their interview, such as by visiting their home or accompanying them to the hospital or self-help group.

Each interview consisted of open-ended questions regarding participation in and experience with the ostomy self-help group. The interview protocol included questions such as how participants engaged in the self-help group, their feelings about the group, the personal significance of their participation, and what the experience of participating in the group was like. These questions were followed by other prompted questions to allow the participants to elaborate more on the topics that arose.

These questions were followed by other prompted questions to allow the participants to elaborate more on the topics that arose.

Data Analysis

The tapes were then transcribed verbatim in Thai for data analysis. All transcripts were produced within 72 hr of interview completion. In-depth data were analyzed using thematic analysis (Sundler et al., 2019). In thematic analysis, the researchers aimed to identify, analyze, and report patterns or themes within the data. As suggested by Sundler et al. (2019, p. 736), the process of analysis consists of achieving familiarity with the data through open-minded reading; searching for meaning and themes; and organizing themes into meaningful categories. The researchers began by transcribing and reading the interviews to become familiar with the data. After this, they sought meaning in the interview text related to the experiences of participating in the self-help group, and finally, they defined and named these themes. In presenting the participants’ verbatim responses, the researcher used pseudonyms to preserve their confidentiality and protect their identities. The translation process began when the research was prepared for publication in English.

Findings

Four themes were identified: sharing knowledge; providing emotional support; normalizing the sense of live with stoma; and devoting oneself to supporting other members. These themes depicted in Figure 1 describe the experiences of participants in the Thai ostomy self-help group. As they received psychosocial support from the group, they developed a sense of living for both themselves and for others.

Figure 1.

The role of an ostomy self-help group in the study.

Sharing Knowledge

Although healthcare workers are responsible for caring for patients with an ostomy, self-help groups play a significant role in providing psychosocial support. Post-surgery, the participants felt inadequately informed of ostomy management. Most of their concerns were related to handling the ostomy, returning to normal life, nutritional changes, routine activities, and bowel movements. All participants noted that the kind of information they received from the group was practical – it could only be obtained from those living with an ostomy. Ben talked about the information she received from healthcare workers:

The nurse told me how to clean the ostomy and how to wear an ostomy bag and dispose of the waste. She also told me to avoid spicy food. This information was good as a basic user, but in real life, there were other issues I had to deal with, such as how I could live with the ostomy while I was still working. How could I handle the smell and noise when I was outside the home? I found these tips from the self-help group. (Ben, 47-year-old female)

This type of practical information requires years of experience and learning by doing through trial and error, such as what kinds of foods one can eat. Regarding the tips she learnt from the group, Nok (51-year-old female) said that, “The group members told me not to eat spicy food as it may cause diarrhea.” The group frequently shared tips and ways to manage an ostomy; for example, how to keep the smell concealed and minimize the noise. The group members also spent considerable time discussing practical tips and ways to cope with an ostomy. All participants emphasized the usefulness of the information, understanding, and coping skills they received through group membership and the sharing of knowledge and mutual experiences with the group. Some participants described the tactics they had learnt from the group:

I chose large clothes to hide the ostomy bag, but the odor was still a problem. Even though there is an odor-barrier film that traps bad smells, I felt it did not work. Then, one of the group members recommended the Indian mint candy which is sold in street Indian shops. When I put this candy in the bag, there was a minty smell instead of a bad odor. That was helpful. (Jib, 50-year-old female)

What we eat can affect the bowel movement. I found out that spicy food affects my digestive tract. Some food such as fruits gives me gas. Certain foods are more likely to cause diarrhea, constipation, or odor. (Yot, 44-year-old male)

Through sharing stories, the group helped to enhance individual knowledge as well as improve quality of life. Senior members, a good source of information and experiential knowledge, helped participants understand ways to live with an ostomy.

Providing Emotional Support

The ostomy self-help group provides a means through which newly diagnosed colorectal cancer patients can meet other patients and share their experiences. Living with a permanent ostomy is difficult for an individual to accept as their life cannot be predicted and controlled. Rattana said:

I was so shocked when I knew that I must have this ostomy bag for the rest of my life. I could not imagine how I could live from now on. I even wanted to commit suicide, but the nurse told me that there were many people who had been living with an ostomy for more than 10 years. The next day, two guys showed up at my bed and introduced themselves as people from the ostomy self-help group. This was the first time I heard about the group. (Rattana, 42-year-old female)

Sharing experiences and feelings enhanced participants’ quality of life. In addition to facilitating the groups, the volunteers played a significant role in modeling life with an ostomy and by providing personal care and support. Jai said:

I contacted them through messenger application. Then, other members would post some information on how to deal with an ostomy. Sometimes, when I had problems or concerns about my ostomy or cancer treatment, I would post my questions. Other members would answer the questions. They often held ostomate meetings as well. I joined as many meetings as I could. It was informal meetings and relaxing. (Jai, 35-year-old female)

Simply being with other people with an ostomy made the participants feel more comfortable as they could share their experiences. Participants commonly report that support groups offer encouragement, a sense of similarity through shared experience, and feelings of being supported and cared for. This provided a unique bond between the group members. Jeab said:

At first, I thought there were only a few people with ostomy. When I went to the self-help group, I was surprised that there were almost 50 people there. One of the volunteers, Rak, told me that some of them have been living with an ostomy for over 10 years. They could do exercise like biking or even swimming. Then, we started talking about our lives and exchanged contact details, like our LINE and telephone number. Even though it was the first time I met her, I felt at ease talking to her. (Jeab, 42-year-old female)

Emotional support was also provided during these social interactions, especially when sharing personal experiences. All participants stated that emotional support and the provision of information (living with ostomy) were important components of the self-help group. They felt that their ostomy experience could be understood by others who had similar illnesses. Reciprocal caring is what the participants perceived from the members of the group. Fai said:

Whenever I felt sad about my health, I would talk to my friends in the self-help group. They understood me the most. I felt close to them, like they were family. We shared our treatment experiences. When I received chemotherapy, I could not eat anything. My weight was only 42 kg. My friend recommended me some herbal medicine which helped my appetite. (Fai, 45-year-old female)

Emotional support—including connecting with other cancer patients through a shared feeling of being understood, shared experiences, and friendship—empowered participants to live with the ostomy and encouraged them to try returning to their normal lives.

Normalizing Life with Stoma

Many participants felt unattractive when living with their ostomy and had low self-esteem due to body concerns. The participants described bodily changes due to having to wear an ostomy bag. They were worried about how to adapt their lifestyle to live with an ostomy. Somporn mentioned:

When I found out that I have to wear the ostomy bag for the rest of my life, I was stressed. I could not tell my colleagues because they would definitely discriminate against me, especially the smell since I have to carry my stool all the time. (Somporn, 47-year-old male)

Having an ostomy is a threat to one’s identity. Participants felt that they would be perceived as “unhealthy” and “unproductive.” Many felt alienated from their bodies, which they perceived to have been “polluted,” and they felt the loss of their regular life. Returning to normal routines made them feel less confident about themselves. They feared criticism and outside speculation. Jubjang, who worked as a government officer, discussed the situation at her workplace:

I did not want to tell anyone about my illness. My colleagues were curious about why I had been away from work for a period of time. When I told my boss about my illness, he said that was all right. He did not assign me to do a lot of work like usual. Instead, he asked my colleagues to do my work. I felt guilty for them. Although they said nothing, I noticed that they were unsatisfied. I felt different when I had an ostomy. (Jubjang, 52-year-old male)

Going on a short trip or attending a party with other group members allowed participants to continue their everyday lives without making demands from their families and friends. Participants avoided talking about their illness with others as they felt too different from them. Jib talked about a trip with the ostomy self-help group:

Since I had lived with ostomy for three years, I had gone nowhere. I was afraid to go outside the house as the ostomy bag may leak. Last year, the ostomy self-help group organized a one-day trip. I thought that they all have ostomy so probably the trip would be fine. It was fun to go outside again to be like normal people. I felt alive again. We start thinking about the next trip now. (Jib, 50-year-old female)

Involvement in the self-help group empowered the participants to live by themselves. The participants built enough confidence to participate in similar activities in the wider community. Sak mentioned:

I had no confidence to go out. I was afraid that the bag would leak or other people would smell the stool or hear some noise. I spent a few months at home. The only place I went was the hospital. When I shared my concerns with the group, they gave me tips to handle all of these issues. Some of them gave me handmade elastic belts. After I tried many tips, I was confident to go outside. I am going to Chiang Mai (a northern province in Thailand) with my daughter next month. (Sak, 47-year-old female)

Regaining a sense of self requires building trust between group members to increase mutual merging and support from each other. The participants appreciated sharing their illness experiences with the other group members.

Devoting My Life to Other Members

The participants appreciated the benevolence they received from the self-help group members. This benevolence was referred as “metta karuna” in Thai. San (51-year-old male) said, “I think all members are benevolent (metta karuna). They helped all the patients for free. Some of them even told me to call him anytime when I had problems with ostomy.” Other participants described:

I have not known the group members before. One day, I have seen one of member talked about his life with ostomy on social media. So I contacted them. The guys who picked up the phone was very kind. He listened to me and also comforted me. Every time I have problems I called him. After a few months, I felt that I could live my life with ostomy. I deeply appreciated his kindness and I hoped that one day I could help other ostomates just like he did. (Jeab, 42-year-old female)

My life was better because of Ben (a senior volunteer). Not only he taught me how to live with ostomy but he also encouraged me to continue to live for myself and others. He quit his job because he wanted to focus on consulting the patients like me. (Fai, 45-year-old female)

The groups provide medical assistance and basic self-care, while also helping patients resolve their problems. The participants emphasized their continued engagement with the self-help group and their desire to help other members through either providing medical equipment or psychosocial support. Ma (51-year-old male) said, “I was still working now. So I have no time to talk to many people, but I told the senior members if some member needs anything, they could tell me. I want to help the group members.” They valued their involvement in the self-help group, finding that their participation helped them to learn about self-care and ostomy management. Helping group members increased the happiness and personal satisfaction of participants. Serb (53-year-old male) said, “All the group members were kind and benevolent. They put all of their efforts to help people living with ostomy.”

Notably, helping other members increased members’ positive view of themselves. Returning the benevolence they received from the group gave them a sense of meaning and appreciation, both given and received, which could improve their quality of life.

Discussion

These findings highlight the importance of participation in ostomy self-help groups in empowering participants on an individual level, by helping them live with the ostomy, as well as collectively, allowing them to help other members through the provision of emotional support, encouragement to get back to routine life, and the sharing of ostomy management tips. The results demonstrate that individuals with an ostomy highly value their involvement in a self-help group and feel that their participation in this group helped them to gain a sense of normalcy.

People with an ostomy emphasized the usefulness of participating in such a group. They were encouraged to return to a normal life which resulted in a learning-by-doing process through trial and error (Kaiser et al., 2021). Lashbrook et al. (2018) noted that patients with colorectal cancer sought information in the survivorship phase to handle self-management so that they could return to their everyday activities. Through the provision of health information, self-help groups help patients to manage their physical and emotional challenges, which in turn improves their health-related quality of life. Receiving information about how to deal with an ostomy helps patients to regain a sense of normalcy and feel in control of their life again. This increased knowledge of ostomy management promotes a sense of life-meaning and improves their ability to cope with illness.

These findings supported those of Docherty (2004), who argued that sharing personal experiences, the expression of gratitude, and offering congratulations are effective ways to facilitate social support in self-help groups. This is an empowerment strategy that the Thai ostomy self-help group employed in the form of sharing success stories to demonstrate the possibility of a normal life. By sharing similar experiences, participants felt that the group members were “likeminded” and had “gone through it before” (Kaiser et al., 2021, p. 6).

Participating in the self-help group helped empower members to live their lives. Group members found they were able to regain a sense of control over their lives, develop supportive relationships, and participate in collective activities (Visram et al., 2012). Empowerment through peer-led support groups in cancer centers has been observed in similar qualitative studies (Skirbekk et al., 2018). Similarly, Mok (2001) described the impact of self-help groups in Hong Kong on intrapersonal, interpersonal, and community or political empowerment. In contrast, the participants in our study mainly focused on intrapersonal and interpersonal empowerment in their self-help groups. Participants attended self-help groups to feel more connected with others and develop friendships with others in the hope of obtaining support. An increased sense of empowerment helps individuals to cope with their illness through sharing experience and empathy. Empowerment can be classified into three processes: motivational (meaning in life), mastery over illness (skill and knowledge), and transformation of thoughts (acceptance of illness) (Ussher et al., 2006). It is clear that the participants in this study have been empowered, as Ussher et al. (2006) described. They also found their lives to be more valuable when they could help other people.

Having an experienced contact person in the form of a volunteer and group member was highly valued by the participants. The motivation for joining a support group can be based on friendship and a desire to “give back” to others (Bell et al., 2010). The self-help group offered a “normalizing” process, with participants stating that they felt like they were treated like normal people. The participants perceived the group as a normalizing space where they could confront their illness and get on with their normal lives. Byfield (2020) similarly found that ostomates participating in an ostomy self-help group in Georgia characterized their experiences with the group in terms of hope, willingness to live again, participation in different activities, and making new friends. This study found similar results to those of Byfield, with the notable addition of participants finding meaning in their life through helping other members in return for the generosity they were shown.

In conclusion, this study contributes to a greater understanding of the benefits of ostomy care programs for addressing psychosocial concerns in Thailand. While health care professionals are crucial in providing medical treatment and management, self-help groups can support their work in providing psychosocial support for patients.

Study Limitations

A limitation of this study is that it focused only on participants living with a permanent ostomy who had undergone ostomy surgery for colorectal cancer. People living with a temporary ostomy may face different psychosocial concerns. This study reflects participation in the ostomy self-help groups and does not systematically distinguish between it and other self-help groups in Thailand. Furthermore, it focuses only on patients living with an ostomy in Bangkok.

Conclusion

This descriptive phenomenological study explored the lived experiences of participants in a Thai ostomy self-help group. The findings highlight how, through receiving psychosocial support, participants developed a renewed sense of living—both for themselves and in relation to others. These insights offer valuable guidance for the development and delivery of psychosocial support for individuals with an ostomy. Moreover, the benefits of self-help groups—particularly the mutual understanding and experiential knowledge shared among members—may have broader relevance for individuals coping with other chronic conditions.