ObjectiveTo describe the real experiences of self-perceived burden and coping of patients with a nonclosure of a temporary stoma in rectal cancer.To improve the understanding of what constitutes the SPB of this population,analyse the factors that constitute the SPB of patients with a nonclosure of a temporary stoma in rectal cancer and the factors that influence differences in coping styles,and provide a valid basis for future healthcare professionals to improve the quality of life and mental health of patients with this type of stoma.Methods1.A retrospective case-control study was used to screen cases according to the nadir criteria,and medical records of patients who underwent prerectal resection with temporary stoma at the First Affiliated Hospital of Xi’an Jiaotong University from September 2015 to September 2020.Telephone follow-up was conducted to determine the return status of patients with temporary stoma in the past five years,to identify non-returned subjects,and to further analyse the risk factors affecting the return of temporary stoma.2.A phenomenological study was used for present investigation.The qualitative interviews on self-perceived burden and coping styles were conducted with the first section of patients with temporary stoma permanency,using the Colaizzi’s methods to analysis and condense the themes and discuss the real experiences of self-perceived burden and coping styles in this population.Results1.A total of 231 patients diagnosed with rectal cancer with temporary stom a from September 2015 to September 2020 at the First Affiliated Hospital of Xi’an Jiaotong University were included in this study according to the nadir criteria.Among them,201(87.0%)patients underwent successful temporary stoma retur n and 30(13.0%)patients failed to return resulting in a permanent stoma.The c auses included anastomotic fistula in 11(36.7%),rectal stricture in 8(26.7%),lo cal recurrence in 5(16.7%),distant metastasis in 5(16.7%)and rectovaginal fistu la in 1(3.3%).Of these,8 cases(26.7%)resulted in permanent initial stoma,6cases(13.3%)in rectal stenosis,1 case(3.3%)in local recurrence and 1 case(3.3%)in distant metastasis,while 3 cases(10.0%)resulted in permanent re-stoma,2 cases(6.7%)in rectal stenosis,4 cases(13.3%)in local recurrence and 4 cases(13.3%)in distant metastasis,1 case of rectovaginal fistula(3.3%).Univariate analysis as well as logistic multiple regression analysis showed that age ≥ 65 year s(OR=2.777,95%CI=1.181-6.532,P=0.019),anastomotic fistula(OR=6.123,95%CI=2.183-17.171,P=0.001),rectal stenosis(OR=6.807,95%CI=2.166-21.391,P=0.001),and local recurrence of tumour(OR=19.238,95%CI=4.716-78.476,P<0.001)were independent risk factors for the permanence of temporary stoma.2.The study finally extracted four themes: their own disease burden,the burden of control caregivers,heavy economic burden,and different coping styles to reduce the burden.The sub themes of each theme were further analyzed.Patients’ burden of their own diseases included unacceptable emotional impact,doubt of self-worth,self blame and shame;The burden of the control nurse includes the worry about the health of the control nurse,the emotional burden of the control nurse and the emotional impact of the control nurse worried about future death;Correspondingly,there are problem centered coping styles and emotion centered coping styles.Problem centered coping styles include active self-care,concealment of physical status and mutual support between society and family;Emotion centered coping styles include denial or avoidance,emotional change from acceptance to submission,self encouragement,and facing the future bravely.Conclusions1.In this study,there are 30 patients with temporary stomas were unable to return the stoma within the prescribed time frame,resulting in a permanent stoma.The risk factors for this may be the type of stoma,local recurrence of the tumour,distant metastasis of the tumour and stoma complications.2.After qualitative interviews with eight patients with temporary stoma permanency,the patients all had some degree of SPB,and the focus of the aspects that make up the patients’ SPB varied depending on family,financial and illness factors.This directly influenced the different ways in which patients responded to their illness and their attitudes and behaviours towards life.3.Medical staffs should identify the sources of SPB,conduct a comprehensive assessment of the patients and their family caregivers’ psychological and physical condition,and implement targeted interventions to help patients develop a positive and healthy mindset,cope with their illness in a positive way and reduce the SPB. |