The two broad themes are Facilitators and Barriers.There are 5 subthemes for facilitators and 6 subthemes for Barriers.(See Fig. 1 for details)
Facilitators
Subtheme 1: Perceive the benefits of self-management
When patients with enterostomy perceive the benefits of self-managed behavior change or perceive the negative consequences of non-self-managed behavior change, they would have a stronger belief in self-managed behavior change and will invest more energy in healthy behaviors.
① The quality of life was improved after enterostomy. Self-management is a skill that patients with enterostomy need to learn and an important means to improve their quality of life. S9: "After learning to manage the enterostomy properly on my own, including changing bags, keeping clean, etc., I feel I have become more confident and independent. If my ostomy bag breaks in public, I can handle it myself, I don't feel scared, and I can plan my life more freely." S4: "Although she had an enterostomy, she is still continuing chemotherapy in the hope that she can control the cancer through chemotherapy."
② Effectively avoid complications. After enterostomy, there are some complications, such as intestinal obstruction and stomy infection, which patients perceive can be effectively avoided through self-management. S8: "Once eating ribs did not eat slowly, intestinal obstruction, went to the hospital to solve, got our disease, we have to eat carefully in the future, can not eat quickly" S3 "My stoma is temporary, the doctor told me that if you do not pay attention to management, if there are complications, it is easy to not recover, I do not want to carry the stoma bag for a lifetime." S1: "For those of us who are older, if we don't pay attention, it's easy not to treat an infection in case it happens."
Subtheme 2: Acquire enterostomy knowledge and skills
Patients with colorectal cancer enterostomy acquired self-management knowledge after surgery through the guidance of doctors and nurses, other people's experience, professional books, the Internet and other ways, actively learn how to manage ostomy, master ostomy nursing skills, and explore self-management methods that are suitable for themselves and combined with their own health conditions
① Doctor and nurse guidance. S3: "The doctors and nurses said I could walk, jog, tai chi, and that these activities would not put undue pressure on the enterostomy. I'm just going downstairs for a walk, a stroll, a break when I'm tired and then go. The doctor told me to gradually increase the amount of exercise, I still don't feel too strong in my legs, and I will jog when I recover."
② The experience of others. S10 "At the beginning of changing the ostomy bag, I spread a lot of ostomy protection powder, thinking that the more the better, the ostomy chassis and the skin were not tight, and after communicating with people who also have ostomy, I realized that I should not spread so much ostomy powder. After reducing the use of ostomy powder, I found that the ostomy chassis is more solid."
③ Network learning. S11: "In the patient group, nurses posted videos about stoma management, such as diet management, how to clean and care for stoma, stoma nursing skills, etc., I opened them when I was free, which was easier to understand than plain text."
④ Professional books. S3. "After my enterostomy, my daughter bought me a book called 'Mind of the Gut', which explains which foods are easily digested by the gut and which foods should be avoided. It helps me choose which foods to eat. Interestingly, the book also mentions the relationship between mood and gut health, which has made me more focus on emotion management and keeping a happy mood."
Subtheme 3: Positive mental adjustment
① The power of religious belief. patients with an enterostomy may experience physical and emotional difficulties, and religious beliefs can help them cope with these challenges. S4: "When I was ill, I started to believe in Buddhism, which freed me from pain and desire."
② Positive emotional regulation. Positive emotion regulation is to face difficulties and challenges with a positive view, thinking and attitude to help oneself gradually come out of the negative state and obtain a positive psychological impact. S2: "In the early days after the operation, the stoma did cause me a lot of trouble, with the help of my family for each care, but considering that the enterostomy saved my life, this difficulty is nothing compared with that." S3: "The doctor told me that I can have this operation when the wound (anastomosis) grows well and the anal function is normal. Now I actively cooperate with the treatment, regular review, and try to return the surgery as soon as possible."
Subtheme 4: Family responsibility driven
The family is the inner motivation source of the patient's self-management, and the patient takes the initiative to adopt healthy behaviors in order to be responsible for the family. It is reflected in the following four aspects.
① Reduce the burden of family care. The disease recurrence of patients will increase the burden of family care, and the burden of only-child families is heavier. The sense of family responsibility enhance patients' awareness of active management. S11: "I only have one child and she's usually busy with work.I don't want to bother her again and put too much pressure on her."
② Reduce the financial burden on families. After enterostomy, patients need to buy special medical equipment (such as enterostomy bags, stomostomy protection powder, etc.) and nursing supplies (such as gauze, medical gloves, etc.), and also need to undergo regular medical examinations and rehabilitation, which brings a heavy burden to the family. S2 "I took good care of myself, learned to change my ostomy bag correctly, didn't waste it, didn't have to run to the hospital, and spent less money."
③ Avoid family worry. Most patients expressed willingness to take the initiative to self-manage and reduce the psychological burden on their families. S4 "I usually pay close attention to the change of the ostomy bag, and check the condition of the ostomy myself. If there is any abnormality, I will tell the child in time, so as not to let them worry."
④ Dedication to family. The patient expects to resume a family role after an enterostomy, caring for and taking care of other family members and sharing family responsibilities, within the limits of their abilities. S4: "I am now actively adjusting to life after having an stoma and I want to look after their baby."
Subtheme 5: The medical security system has been improved
By providing comprehensive medical security, professional medical team support and reimbursement system, the self-management ability of enterostomy patients is effectively improved.
① Adequate medical resources. Patients after enterostomy surgery can get more comprehensive medical resources, including regular outpatient review, professional nursing guidance, timely complication management and health education. S5: "The ostomy clinic goes to work every day, and it is very convenient to take the ostomy bag and repeat the ostomy situation." S10: "Now I often participate in the health lectures organized by the hospital, we sit together and exchange the experience of ostomy care and how to care well."
② Medical expenses protection. In recent years, starting from the reform of workers' medical insurance, China has comprehensively integrated the two systems of urban residents' medical insurance and the new rural cooperative medical care system, unified the urban and rural residents' medical insurance system, effectively improved fairness and inclusiveness, and effectively protected the people's demand for "medical care for sick people". S2: "I always pour three times a day, and change the bag every two or three days. We are urban residents' medical insurance, and the reimbursement costs about 700 yuan per month, which our family can accept, but if we don't have medical insurance, we have to spend more than 2,000 yuan, which is quite a big cost, thank the state for such a good policy."
Barriers
Subtheme 1: Lack of ostomy knowledge and skills
For patients with enterostomy, knowledge about stoma is the basis for self-management, and the lack of knowledge and skills includes the following points.
①Improper postoperative care. Improper use of medical devices, not understanding the correct use of ostomy products and replacement frequency. S2: "I sometimes get itchy around my stoma. I asked the doctors and nurses, and they said it was dermatitis and asked me to change my stoma bag frequently. I didn't know how many days I had to change my stoma bag. S6 "Before, I cut the stomostomy chassis too big, I thought it would not get stuck to the intestines if it was too big. Later, I began to itch and redness around the stomostomy. When I came to the stomostomy clinic for a return visit, I realized that it was because the understomy was cut too big and the skin was stimulated by the stool " S1 "When my family first changed me, they did not dare to put too much ostomy protective powder, for fear of irritating the ostoma and failing to stick to the chassis of the ostoma."
② Not familiar with the management of complications: do not know the possible complications and management methods after ostomy. S6 "There was a slight bleeding around the stoma, and I didn't know why, which scared me to go to the stoma clinic."
Subtheme 2: Adverse experience of disease
Patients with enterostomy do not adapt to the changes brought about by the disease, resulting in adverse experiences and negative emotions, which brings challenges to self-management.
① The quality of life is declined. Patients with enterostomy face dietary restrictions and weight restrictions, which are easy to cause depression, anxiety, self-esteem damage, etc., affecting their enthusiasm for self-management of stoma. S6: "It is very annoying, after the operation, the medicine can not be broken, eating is controlled, dare not exercise too much, and all aspects are restricted."
② Feeling of uncertainty about the disease. Patients lack knowledge about the disease and are not sure whether various postoperative symptoms are related to enterostomy, resulting in psychological anxiety. S2: "I always feel bloated after the operation. I don't know if it is because of the ostomy and I am afraid of the tumor spreading."
③ Changes in body image. Enterostomy may cause changes in the patient's body image, and this change may trigger self-esteem and confidence challenges in some patients, resulting in patients unwilling to face the problem of stomy. S9: "I feel like it is a very embarrassing thing to have this disease and to have a stoma, and I don't want my stool to get out of control and come out of my abdomen."
④ There is a sense of drop. Enterostomy surgery can have a certain impact on the patient's body image and daily life, resulting in a sense of drop in the patient. S5: "My original patient friend, his stoma has been restored, but mine can not, I have to carry the stoma belt all the time, I envy him."
Subtheme 3: Social negative environmental impact
Enterostomy patients not only have to deal with physical challenges, but also are affected by the social environment.
①Social alienation and exclusion: Patients with an enterostomy may be considered unfit to participate in activities or may cause physical discomfort and thus be excluded from social activities. S10: "I used to go out to eat and travel with my poker friends, but since I got this disease, people also know that I am inconvenient and don't call me anymore, and gradually I have no friends."
② Embarrassment and shame: Some patients may feel embarrassed or ashamed because of their enterostomies and are afraid to talk openly about their condition. S6: "I used to go for a walk and play chess with my friends, but now I don't go. I always feel that they are staring at my abdomen. I am afraid that they will ask me about my enterostomy, which will become the topic of their conversation.
③ Excessive fear of enterostomy. Excessive fear due to the external environment may make it difficult for patient to carry out normal care of the enterostomy. S2: "A relative died because of this disease, just one year after the operation, I am also very afraid, dare not look at the enterostomy, do not know when the life will suddenly end, dare not think."
④ The traditional culture is deeply rooted. In traditional Chinese culture, some patients may consider having an enterostomy to be a shame. S10 "Body hair and skin by the parents, there is a abdomen on the stomach, very ugly."
⑤Fewer job opportunities. An enterostomy may result in some physical limitations, such as the need for special care and regular replacement of the ostomy bag. These restrictions may prevent the patient from engaging in certain social activities or jobs. S6: "I used to do decoration, after having an ostomy, I can't do heavy work, and the decoration company doesn't want me, I feel bad about this."
Subtheme 4: Family barrier
Family is an important support force for self-management of enterostomy patients, but when family members lack health management knowledge or support for patients' life, it will affect the self-management ability of enterostomy patients.
① Family members lack knowledge. Family members do not agree or understand the patient's lifestyle, dietary preferences, exercise habits, etc., and are unable to provide effective guidance and advice. S1: "Now retired at home, my wife does not let me do anything, afraid of ostomy out" S9: "My wife let me eat more meat, and make me take nutritional supplements for fear that I'll be weak, and once constipation is very serious, I'll have to drink lactulose to relieve it."
② Family responsibility pressure. Some patients focus on taking care of other family members and family affairs, ignoring the management of their own diseases, and the pressure of family responsibilities makes their self-management face challenges. S8: "Now I am guarding the gate for others, do not pay attention to my meals, go to the canteen, and have no time to exercise." S3: "I have not done my duty as a mother. I can't help my child in many things because of this illness. I feel very guilty."
③ The family atmosphere is tense. As a result of the disease, family members may need to spend more time and energy to care for the patient, and their life status will be significantly changed, and family relationships and family atmosphere will also be affected. S4:I'm also uneducated, I was supposed to deliver to other people's supermarket, I can't do hard work since I got this disease, my partner sometimes complains about me and says I'm useless, I can not lift my head at home."
Subtheme 5: Limited access
-
① The level of community nurses is limited. Community nurses play a key role in the residents' health management and rehabilitation process, and can help residents cope with ostomy problems. However, at present, the number of ostomy nurses in the community is relatively insufficient, and most community nurses, as the main component of community health institutions, do not have the professional level of continuity care, which can not meet the growing demand. S2: "It took my family four hours to drive to the hospital that had an ostomy clinic. The ostomy was infected and the community hospital couldn't do it and they didn't dare." S11: "I hope the community nurse can also answer the knowledge about stoma, and some community nurses can conduct home visits."
-
② The hospital level is limited. S1 "Our county hospital can not do enterostomy surgery, can only go to the big hospital, do not know which specialist, before and after a lot of delay." S9: "I use a convex ostomy bag, the model can not be bought in our hospital, can only go to the provincial hospital to prescribe, the amount of the ostomy bag with a maximum of 2 weeks, so it is very troublesome to often run to the hospital."
Subtheme 6: Information access barrier
Effective management information is the premise and guarantee of self-management of enterostomy patients. The obstacles to information access mainly include the following three reasons.
① Lack of access to information. Information about enterostomy for colorectal cancer may not be widely available and patients do not know how to find it. S7: "I don't know where to get other information except from the patient group." S5: "There are no easy-to-understand books specifically for enterostomy patients, such as how to care for the stoma, how to exercise, what to eat more, what to pay attention to."
② Lack of professional information. Professional books and medical staff guidance are effective ways for patients to obtain professional information about self-management. It is not easy for patients to accept information when the content of medical staff's education is abstract and general and there are professional terms. S9: "The nurse told me to eat less meat for fear of intestinal obstruction, but did not tell me how many times a week I can eat meat, very general." S8 "In the ostomy clinic, a nurse asked me if I had complications, I don't know what complications mean."
③ Non-professional information is complex. The management information obtained from the Internet and wechat is complex and lacks certain credibility and scientificity. S8: "The credibility of the information on the Internet is not very high. It says that after having an enterostomy, life has changed a lot. I can't work, I have to rely on my family, and I can't change my stomy bag by myself." Misinformation is rampant. There is a lot of misleading information in the management information that patients receive. S6 "The internet says that bathing is easy to get infected, so try not to take a bath, and I was afraid to take a shower when I first started having a stoma."