Ostomy patients’ perception of the health care received

ABSTRACT Aim: to describe ostomy patient’s perception about health care received, as well as their needs and suggestions for healthcare system improvement. Method: qualitative phenomenological study was conducted, involving individual and semi-structured interviews on the life experiences of 21 adults who had a digestive stoma. Participants were selected following a purposive sampling approach. The analysis was based on the constant comparison of the data, the progressive incorporation of subjects and triangulation among researchers and stoma therapy nurses. The software Atlas.ti was used. Results: perception of health care received is closely related to the information process, as well as training for caring the stoma from peristomal skin to diet. It is worthy to point out the work performed by stoma care nurses ensuring support during all stages of the process. Conclusion: findings contribute to address the main patients’ needs (better prepared nurses, shorter waiting lists, information about sexual relation, inclusion of family members all along the process) and recommendations for improving health care to facilitate their adaptation to a new status of having a digestive stoma.


Introduction
The effects caused by a gastro-intestinal (GIT) stoma do not just exert physical and physiological influence, but also affect patients' emotional and social sphere. For these patients who need to face an ostomy after surgery, this is one of the most difficult experiences in their lives. Nevertheless, intervention might be a second chance to keep living in these cases of patients with colorectal cancer, as well as in those cases when that would involve an improvement of symptom control and an increase in the quality of life in people with inflammatory bowel diseases (1)(2) .
On many occasions, the situation that patients find when they are discharged from hospital is devastating.
They do not just have to face the traumatic situation of being aware of a body that has been surgically modified; they also face huge problems when they need specialized care, which might solve their doubts, and need to receive suitable information to adapt them to this new situation. The patient is entitled to receive specialized medical and nursing health care within the preoperative and postoperative period, whether in the hospital or in the Primary Health Care Centre. These patients are likewise entitled to receive counselling before the surgery, in order to ensure that they are fully aware of the benefits of the surgery and the essential facts about coping with a stoma (3) .
In the Spanish context, there are just a few hospitals with stoma care units or units that follow any kind of training protocol for this specialized care before and/or after the surgery. In many cases, patients suffer a lack of suitable information when they are discharged from hospital (4) . Often, the patients themselves have to assume their care (5) .
Few studies have been carried out to explore the perception of patients with a digestive stoma about the health care received. Research has been more focused on quality of life, problems related with stoma and use of devices or the development of complications after the surgical process.
Previous reviews identified non-met needs in these patients, both in Community Care and at home. They addressed key interventions for comprehensive care from inpatient care to transition to home, with special emphasis on care planning and coordination, along with patient education (6) .
In this sense, by promoting self-care, coping mechanisms facilitate patients' daily life and stress the important role of information and education to empower patients and caregivers in the responsibility for stoma care (7) . A quasi-experimental study based on 110 ostomized patients analyzed the effect of educative interventions provided by nursing. It revealed how the lack of information, communication and education in these patients avoids their participation in selfcare. Thus, planned and structured education is a key ingredient for their social rehabilitation (8) .
There is little evidence, however, about strategies to improve health care for ostomized patients from their own experience and point of view (9) . This study is aimed at identifying the perception of people with a digestive stoma about the process of care received and the areas for improvement they detect, as well as their needs and suggestions for this purpose. This is the final study in a research series about the experience of people with a digestive stoma (10-12)

Method
Qualitative study with phenomenological approach.
It is based on Husserl's descriptive phenomenology (13)  disease that led to the confirmation of the ostomy (Cancer, Crohn's disease, ulcerative colitis, familial polyposis); type of intervention (scheduled or urgent surgery); duration of stoma (temporary or permanent) and sociodemographic criteria such as age and gender.
The theoretical sampling guidelines were followed (14) , reaching theoretical saturation based on the narratives of 21 patients.

Results
The research included the narratives of 21 patients taking part in the research. Twelve of them were men and 9 women, aged from 20 to 75 years. Fourteen patients had a GIT stoma due to an oncological process, 6 of them due to inflammatory bowel diseases and 1 due to familial polyposis. Patients with ileostomy represented 48% and 52% had a colostomy. More than half (62%) had a permanent stoma and 38% a temporary one.

The analysis identified three main categories:
Health care received, Health care management and problems met, and needs-suggestions for improvement.

Health care received
The functions the informants assign to the stoma care nurse are duly identified, highlighting all those tasks related to the information and training, which enables them to better adapt to their new situation. See quotes of category in Figure 1.

Sub-Category
Quote from participants

Roles of stoma nurse: the information and training
The person helping us must be close to us, just like A. [a stoma care nurse] a fully committed person whose work is entirely devoted to the patient. She solves any doubt very quickly and very well (A2)*.  Some patients highlighted the importance of trusting somebody who might solve all their doubts and concerns that arise along the process and also encourage them to go ahead.
Another task to be managed by the stoma care nurse is the training to take care of the stoma, the selection of the type of pouching system, diet and information about of the latest advances.
Teaching and the training process about the irrigation and treatment of the problems caused by the stoma and peristomal skin were other functions the patients identified as the responsibility of the stoma nurses.
One of the issues to be highlighted is the relation between the health care received and the information provided to patients all along the process. All the patients pointed out this factor, as they consider it plays a key role to allow them to face their situation. In this sense, they consider that stoma care nurses are "the experts" on stoma care and that they play a "key role" in their education and information.
Patients also stated that they experienced a change in their lives. It resulted from the influence of a professional who guided them in all the issues concerning the stoma. This fact contributed to get rid of the feeling of uncertainty and fear the unawareness and the lack of information provoked, which promoted their return to their normal life.
With regard to the follow-up process carried out by the stoma care nurse, patients pointed out that they felt calm for knowing they can contact someone who solves their doubts. They also remarked the importance of a follow-up period until they feel self-sufficient.
Relating to patients who had surgery in a hospital without a stoma care nurse service, it was the registered nurse who provided them with information during their hospitalization. Once they were discharged from hospital, however, the manufacturer's employees assumed that task at best, when they were not confronted with an information void. (Figure 2)   Figure 3 shows quotes from participants.

Sub-Category Quote from participants
The lack of resources and training by the professional staff, jointly with the lack of information received, originated not only feelings of fear, uncertainty and helplessness, but also problems with peristomal skin. It is worth mentioning that these statements came from patients who received health care in private medical centres. It also showed that teams in private medical centres do not offer stoma care nurses.

Lack of information concerning stoma by the professional staff is also identified in Primary Health
Care Centres.

Sub-Category Quotes from participants
Inconvenience faced It took eight months to get a diagnosis since the symptoms started due to problems with the administrative protocol (…  Subsequently, they focus more on the need for preoperative and postoperative information, so as to avoid doubts that might lead them to develop negative

Sub-Category
Relation between needs and information received.

If you are diagnosed on time when you have any simple disease, the cure percentages are very high (…) If I had known what I know now, I just had a blood test and I wouldn't have had to suffer a stoma (A1)*.
You may have some problems such as the skin redness or stoma bleedings, which is something normal, but you don't know this at the beginning and you may get scared. There are some people who don't know where to ask when facing this kind of problems because the nurses in Community Care Centres are not prepared for these matters (…). We all miss trained staff in these places where we receive health care, I mean Community Care Centres (A9).

If you know what you have, you may look for skills to face it, but if you don't know it, you feel very confused. Imagination is such a powerful skill and, in this case, imagination runs freely and you always tend to think negatively (C9).
I would like you to please give more specific information, especially within the preoperative and postoperative process, because it is very complicated to have doubts because you always tend to think of the worst (…). Just to make you see the goal you can reach and know that you will be able to live well afterwards. This can help people who are undergoing the preoperative and postoperative process (C9).
What I would improve in any hospital is the information provided to the patients, because they should tell you what you need to do when you are discharged, they should give a manual for ostomized patients, because the time you take to learn or to know anything you need on this matter is a very hard time (C5).
It would be really interesting that the closest relative also receives the information session jointly with the patient, and that afterwards they provide further information little by little so that everything is under control when they leave. It would also be important that they involve the relative each time they do something related to the stoma (A2).
I had many doubts about sexual relations, I wondered if I was going to be able, as the saying says: "to be a man again" [he laughs] (…) I would really have appreciated to have been told: "Hey, don't worry; it will keep working (C9).
I would ask for shorter waiting periods, because is horrible, especially when you have cancer because you are aware that the tumor is growing and you think that maybe when they will get it, it will be late (C9).
Sooner operation. That could be improved because it took very long for me until I was operated. They let it go for too long and then it is worse (C4).
*Alphanumerical code used to identify participants Figure 4 -Quotes from category "Needs and suggestions for improvement" feelings. In addition, patients mentioned that the advice they received upon the discharge from hospital should be improved in order to prevent future complications.
Patients also stressed the importance of family.
Their relatives should be properly informed and involved all along the process. One of the needs underlined was to receive more information about sexual relations.
Another demand identified is the reduction of the waiting periods, mainly in these cases when time plays against patients, such as oncological diseases.
Finally, some patients with inflammatory bowel diseases mentioned the importance of undergoing the surgery sooner than they did in order to end suffering.
Person-centered care is claimed to be an useful tool that helps them to go ahead. Patients also mentioned that nursing professionalism plays an important role within the process. It makes reference to the idea that, if you work with people, you need to be ready for such a task ( Figure 5).

Discussion
This study was aimed at obtaining information about the perception of people with a digestive stoma regarding the process of care received and the areas for improvement they detected, as well as their needs and suggestions for improvement.  (15)(16)(17) .

One of the main findings was that information is
It is worth mentioning the close relation between the skills and level of specialisation and the care provided by nurses, as well as the importance of engaging other people in the process, as other authors also pointed out (4) .
Information is a basic resource to develop coping strategies and plays a predominant role throughout the process, as stated in different studies (17)(18)(19) . That information should be provided not only to patients, but also to the closest relatives, who need to be more involved in the process.
Needs and improvements patients suggested during the interviews appoint that the patient is entitled to receive specialized medical and nursing care within the preoperative and postoperative period, not just in the hospital but also in Primary Care. These patients are likewise entitled to receive counselling before the surgery in order to ensure they are fully aware of the benefits of the operation and receive suitable information on the essential facts about living with a stoma (3) .
Within our scope, however, these rights are not always guaranteed and this fact leads the stoma patient to feel helplessness on some occasions after they are discharged from hospital (17)(18)(20)(21) . They also need to train on their own and develop information seeking behaviours until they find specialized staff (3) .
Additionally, stoma patients identified further needs that are also important, although not directly related with the lack of information, such as: the reduction of the waiting periods or the importance of being operated on in earlier stages of the disease in order to end their suffering. Without this, they will suffer uncertainty and desperation. These patients who underwent the process during a holiday, such as the summer or Christmas period, mentioned that they missed information in both the preoperative and postoperative period, as well as training offered by professional staff, entailing a lack of confidence for many of them. and you won't think that the chemo is the panacea any longer"(…) then I thought: "then I won't undergo chemo anymore, to avoid suffering? It won't be worth it" (…). That was horrible, it was the only negative experience I had during the entire treatment. If they are not good to be in front of a person, then they'd better work as researchers (A3).
*Alphanumerical code used to identify participants Figure 5 -Quotes from category "Needs and suggestions for improvement" Bonill-de las Nieves C et al.

Conclusions
The perception of the health care received is closely linked to the information and communication process experienced. Regardless of the nature of the information received, this is considered to play a key role in order to face the situation and get back to normality. It also affects the quality of life. The importance of the stoma care nurse in all stages of the health care is specifically stressed, being the professional of reference to obtain support.
Patients pointed out important needs that were not met as a result of a slightly rationalized healthcare service that is very variable with regard to service access, waiting periods, specific training of the professional staff in information and health care coordination. Some of these needs informed should be included in the design and development of services for Ostomized patients, or in the redesign of the current health care provided to them.