ABSTRACT
Stomas cause various physical, psychological and social problems among individuals and their family members both when they are created and in the post-hospital period. In the present study, an in-depth interview was conducted with a family member of a person with stoma. A structured questionnaire was utilized in this interview period. The entire 60-minute interview was recorded with a voice recorder. The collected data were analyzed by inductive method, and themes and sub-themes were identified. The daughter of the stoma patient, E.Y., is a 51-year-old married housewife with two children. Her mother underwent ileostomy due to rectal cancer. From the results of the analysis of the interview, four core themes were determined as need for information, quality of life, adjustment issues and difficulties, and suggestions to other individuals with stoma, together with their sub-themes. The core and sub-themes structured within the present study vividly illustrate how her life was affected and the problems she encountered. Therefore, adjustment to living with stoma must be regarded as a process that includes all family members. In order to accelerate the adjustment process to living with person with stoma, it is also important to include family members in this adjustment process. Hence, needs of the family of a person with stoma must be determined in advance, prior to the surgery, and relevant nursing interventions appropriate for the family must be determined and implemented.
Introduction
Stoma is one of the surgical procedures commonly used in the management of many conditions, primarily cancer. The main purpose of opening a stoma is to resolve the pathological condition, to extend life expectancy, to improve quality of life and to help patients return to a productive life.1 However, stomas cause various physical, psychological and social problems in patients and their families, both when first introduced and after discharge from the hospital.2,3,4,5,6
In addition to these problems, stomas also result in a need for care. This care includes meeting the needs of a chronically ill person such as feeding, dressing and hygiene, as well as providing emotional, physical and financial support. Providing this complex support makes the living conditions of the caregiving family member more difficult and increases the burden placed on them. Family members who bear the responsibility of primary caregiver experience considerable physical, emotional and social hardships during this time.6,7,8 For this reason, the family members of patients with stomas also need support.
In Turkey and abroad, there are few studies that aid the adaptation of family members of adults with stoma or evaluate the problems they face.7,9,10,11 The aim of this case report is to share the experiences of a daughter caring for her mother, who has a stoma. We believe this case will contribute to the planning of approaches to ease adaptation among family members living with stoma patients and will serve as a guide to studies in this area in Turkey.
Discussion
This case report presents the results of an in-depth interview with the daughter of an individual with a stoma. It has been previously reported in the literature that stomas have a psychological, physical and social impact and decrease quality of life not only for the patient, but also the family members living with the patient.2,3,4,7 In a study investigating burdens on caregivers to colorectal cancer patients, Kaynar7 also found that people caring for stoma patients had a greater burden. In this case report, E.Y. states that because of her mother’s stoma, her life and family took secondary importance and her life quality was adversely affected, which illustrates that stomas also result in negative consequences for patients’ family members.
Patients with colorectal cancer may be faced with stoma before they have passed the initial stage of cancer diagnosis. For this reason, E.Y. was also surprised when she was first faced with stoma and blamed herself for her ignorance and not being informed about stomas beforehand. This result may explain why relatives experience difficulty accepting the stoma when they first see it postoperatively. We believe the difficulty experienced by E.Y. during the first stages of the treatment and adaptation process negatively affected the ongoing process.
Previous studies have documented that stoma patients and their families are not adequately informed preoperatively, and that this can lead to feelings of regret and guilt in the patients and their families postoperatively.5,6 In her interview, E.Y. also expressed regretting the decision to have the surgery. Based on these sentiments, it is believed that although the stoma area is marked, the individual and their family are not sufficiently informed about the stoma or are not able to internalize the education they receive due to anxiety and stress. Therefore, stoma education may be more effective if different methods are employed, such as giving patients and their families opportunities to ask questions and making the process interactive. This approach may help to reduce negative feelings in family members like those experienced by E.Y.
The burden of care on family members of individuals with stoma may be higher when the patient is unable to independently care for the stoma, either for reasons related to the stoma region or due to other diseases, and therefore requires constant assistance.10 This burden can negatively affect the social life and family relationships of the caregiver. Various physical, psychological and social difficulties have been reported in caregivers who are not able to make sufficient time for their family and social life.5,6,10 In the literature, the ability to independently care for one’s stoma is described as a skill.12 However, the opening of a stoma negatively affects an individual as much psychologically and socially as it does physically; therefore, patients fail to develop the skills required for stoma care, are unable to manage independently and require support to care for their stoma. In addition, there is also a need for family support while the patient is adjusting to having a stoma. In this case, because the stoma patient was 71 years old and had Parkinson’s disease and visual impairment, she had difficulty performing stoma care and we believe this further increased the burden of care on E.Y. In addition, E.Y.’s account shows that her social life and family relations were severely impacted when she prioritized caring for her mother over attending to her own needs. Therefore, in order to reduce the burden of care, family members must also be included with the patient in training and education conducted at discharge.
Another key factor in stoma care is the proper placement of the adaptor and bag. For this reason, manual dexterity is important in stoma care. Manual dexterity improves while living with a stoma.12 However, stoma patients may experience various physical difficulties until the manual dexterity of the stoma caregiver, be it the patient or a family member, develops sufficiently. In our case, the caregiver also expressed that her manual dexterity was not adequate to care for the stoma at first, but improved over time. To ease this adaptation process, both patients and their caregiving family members should undergo practical training before discharge.
Moreover, based on the statements of E.Y., we believe that living far from the treatment center and having difficulty reaching it had negative impacts on both the physical and psychological aspects of her life. Therefore, as in this case, it may be beneficial to provide counseling on the phone to stoma patients and their families who live far from treatment centers and for whom face-to-face communication may not be possible, in order to answer their questions, allow them to share their problems, and provide guidance.
The difficulties faced by E.Y. while caring for her mother and her recommendations for minimizing these problems are important for other stoma patients and their families. The views emphasized by E.Y. during the interview include key points for facilitating adaptation in family members of stoma patients. Her account also underlines the critical role medical staff have in training and informing stoma patients and their families.
In conclusion, the themes and subthemes developed in this study present a striking picture of how the subject’s life has been affected and what problems she has experienced. This case demonstrates that adjusting to life with a stoma should be considered a process that involves the entire family. To accelerate adjustment to living with a stoma, it is essential that family members also be included in the adaptation process. Therefore, it is recommended to determine the needs of stoma patients’ families starting in the preoperative period and to address these needs through the planning and implementation of appropriate nursing interventions.
