- Email: [email protected]
Who is being missed in ostomy research?
Who Is Being M ssed in Ostorny Research? B a r b a r a Pieper, PhD, RN, CS, CETN, F A A N
his article c o m p a r e s persons who were i n c l u d e d in a research study a b o u t living with an ostomy with those who were not included. Persons not inc l u d e d were those who were too physically ill to b e i n d e p e n d e n t in care, persons with paralysis, a n d persons with m e n t a l illness. Research a b o u t persons with ostomies should include an ethnically diverse sample, d e a l with caregiver a n d h o m e care needs, a n d investigate special populations such as those in psychiatric units, rehabilitation units, or longterm care facilities. ET nurses are chall e n g e d to p a r t i c i p a t e in more ostomyrelated research. (J W O C N 1996;23: 205-9)
T
ET nursing began with the provision of care to persons with ostomies. Because ostomy creation changes a person's appearance and method of elimination, it may affect a person's body image, moods, coping, lifestyle, interpersonal relationships, and sexuality. An ostomy poses physical and psychosocial challenges not only for the person with an ostomy but for that person's partner, family, or caregiven Patient, family, and staff education and counseling remain critical components of the ET nurse's role. Research findings help to delineate components of ostomy care, education, and counseling. Every research project has a target population. From this population, the researcher selects a sample according to the study's purpose and design, the accessibility of subjects, and human rights issues. I participated in a study that examined the perceived effect of an ostomy, psychosocial adjustment, coping, reintegration into normal living, and meaning in life for persons with a fecal ostomy (reported in the preceding article). This project gave me the opportunity to explore ostomy-related research, to examine the numbers and types of persons who could not be included in this research, and to consider gaps in ostomy research.
LITERATURE REVIEW Researchers historically have examined what it is like to live with an ostomy. C o m m o n research themes include ostomy-related concerns; psychologic states; quality of life; body image; participation in work, home, and leisure activities; and sexuality. Depression, a frequently reported response to an ostomy/-8 may be short-term or long-term and may be affected by the type of ostomy the person has? Coping responses include denial, stoic acceptance, helplessness and hopelessness, and fighting spiritd -7"s Quality of life has been reported to be low (as among persons with cancer) to improved (as among persons with ulcerative colitis). 9-12 Common concerns include odor, restricted social lives, restricted leisure opportunities, employment, sexual problems, and fear of ostomy care. I" s-7, 1318 Sexual problems have also been related to ostomy creation. 3" 5-7 Concern regarding the ostomy may affect body image and self.concept.19, 2oSome studies have examined partners' concerns related to the ostomy and the importance of these conterns.14, ~5, 18. 21-24Couples may have different patterns of distress and coping with time. Most subjects in reported research have undergone permanent ostomies, except in cases of ostomies created for one stage of a continent diversion procedure.* Wade's research 25 included persons who had temporary ostomies; these persons also had a need for teaching and counseling. Other research about temporary ostomies has focused on the surgical procedure/6-28 and one researcher has examined the needs of persons who have ostomies as a result of violence. 29 Even though multiple issues have been examined in ostomy research, much research remains to be done. Ostomy research results should be read in historical context because ostomy equipment, availability of ET nursing care, and surgical procedures have changed. Sample size has been small in some studies, and ethnic di-
Dr. Pieper is an associate professor and clinical nurse specialist, College of Nursing, Wayne State University, Detroit. Reprint requests: Barbara Pieper, PhD, RN, CS, CETN, FAAN, Associate Professor. Wayne State University. 5557 Cass Ave,, R o o m 337, Detroit, M148202. *References I-4, 8, 10-I I, 14, and 16-18. Copyright@ 1996 by the Wound, Ostemy and Continence Nurses Society. 1071-5754/96 $5.00 + 0
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Pieper
T a b l e 1. Descriptive c o m p a r i s o n of study p a r t i c i p a n t s versus n o n p a r t i c i p a n t s (N = 127)
Variable
Nonparticipant (n [] 60)
Participant (n = 67)
40
50
20
]7
Sex Male
Female Ethnicity Black White Age (yr)* Reason for stoma Disease Gunshot wound Traumatic injury Stoma duration Temporary Permanent Disease cause for ostomy formation Cancer Diverticulardisease Othert Discharge site Home Another hospital or rehabilitation unit Long-term care facility Died
54 6 48.3 _+21
43 24 42.3 _+18.9
45 ]3 2
36 28 3
20 40
48 ]9
18 3 24
14 12 I0
37 10 7 6
67 0 0 0
*Mean + SD. "i'lnflammatory bowel disease, bowel obstruction, familial polyposis, incarcerated bowel, or perirectal abscess or fistula.
versity has been limited. Many areas for original and replication research remain.
PURPOSE The purpose of the primary research was t o examine the perceived effect of an ostomy--psychosocial adjustment, coping, reintegration into normal living, and meaning in life--for persons with fecal ostomies (results reported in the preceding article). Three groups of persons who had fecal ostomies were included: those with permanent ostomies as a result of disease, those with temporary ostomies as a result of disease, and those with temporary ostomies as a result of violence. Participants were aged 18 years or older, able to complete their own ostomy care and function independently, able to understand and respond in English, willing to sign a research consent form, and discharged to their homes after acute hospitalization. Persons excluded from the re-
search were those with paraplegia or quadriplegia, severe mental or physical illness, a urostomy, a second ostomy, or an ostomy for a continent diversion. Persons with paralysis were excluded because of issues related to adjustment to paralysis, discharge to a rehabilitative setting before returning home, and potential issues with self-care related to level of paralyzing injury. Severe mental or physical illness raised ethical questions of informed consent. Persons with urostomies were excluded because of lack of research knowledge regarding psychosocial similarities and differences between persons with fecal and urinary ostomies. A second ostomy could influence a person's adjustment. Continent diversions were rarely performed in the facilities used, and these procedures m a y necessitate investigation of a fourth group in terms of adjustment. The number of persons I could not ask to be in the study at one data-collection site (n = 60) was almost equivalent to the number of persons who d i d participate (n = 67). The purpose of this project was to explore h o w study participants differed from nonparticipants.
METHODS A retrospective chart review was completed, and the demographic forms developed for the p r i m a r y research study were used to record information for the 60 persons who were not subjects in the primary study. These forms allowed collection of such background information as age, sex, and ethnicity. Information about the ostomy included the reason for ostomy const-ruction, type of ostomy, and ostomy duration (temporary or permanent). Perioperative concerns such as number of operations, length of stay, and critical care stay were also recorded. All items had face validity.
Statistical Analysis The results are presented w i t h frequencies and means for descriptive purposes.
The ~2 test was used to compare nominal variables between the two groups, and the t test was used when intervals or ratiodependent variables were compared.
RESULTS During the data-collection period from March 1991 to July 1993, 40 men and 20 w o m e n who were primarily black (90%)
JWOCN
Volume 23, Number 4
d i d not qualify as research subjects (Table 1). Their ages ranged from 18 to 91 years (mean 48.3 years, SD 21 years) and d i d not differ significantly from those of the research participants. The reasons for ostomy construction for the nonparticipants were disease (n = 45), gunshot w o u n d (n = 13), and traumatic injury (n = 2). Traumatic injury included rectal d a m a g e from jumping from a car and from impalement on a bicycle bar. Because the number of persons with traumatic injury was small, these subjects were placed with the disease group for statistical analyses. The nonstudy group contained more persons with an ostomy as a result of disease and the study group contained more persons who were shot, (X2 [1, N = 127] = 5.86, p = 0.02). The most common disease in both groups was cancer (n = 18; Table 1). More ostomies were designated as permanent (n =40) than temporary (n =20) in the nonstudy group; the reverse was true in the study group,(x 2 [1, N = 127] = 18.67, p < 0.001). The reasons for exclusion from the prim a r y study are presented in Table 2. The most common reason for exclusion was physical illness (n = 16); some potential participants were too ill to learn ostomy care and thus were not independent in caring for themselves or their ostomies. Many were confined to bed and dependent on a caregiver at home or in an another institution to help with care needs. In addition to physical illness, some persons (n = 11) were being treated for such psychiatric diagnoses as depression, schizophrenia, and personality disorders. Ten persons had a spinal cord injury; adjusting to this injury w o u l d have affected their responses to the study items. The category "ostomy-related situations" (n = 10) referred to persons who had second ostomies, urostomies, ostomy closure before discharge, and to unexpected discharge of the patient before teaching was done. Seven persons were too demented or confused to learn ostomy care, and six persons, who w o u l d have been considered too ill to participate, died before discharge. The discharge destinations of the nonparticipants varied. Although 30 persons lived alone before operation, only 11 were sent home alone at discharge. Twentyfour persons, compared with 21 persons before operation, planned to live with someone. Ten patients were sent to an-
Pieper
Table
2. Primary reason for exclusion as a research p a r t i c i p a n t Cause
n
%
Physically too ill Marked mental illness Ostomy-related situation Spinal cord injury Confused/demented Died
16 11 10 10 7 6
26.7 18.3 16.7 16.7 11.6 10
other hospital or rehabilitation center; seven were discharged to long-term care facilities. The n o n s t u d y group had a higher acuity of illness, as demonstrated by number of operations, time spent in critical care, and length of stay. The nonstudy group underwent significantly more surgical procedures (mean 2.6) than d i d the study group (mean 1.5, t[121] =-3.54, p = 0.001). The nonstudy group spent significantly longer in critical care (mean 10.1 days) than the study group (mean 2.4 days, t[123] = -3.03, p = 0.003), and they had significantly longer hospital stays (mean 24.9 days) than the study participants (mean 15.9 days, t[119] = -3.05, p = 0.003).
DISCUSSION This article compared persons who were and were not included a research study about persons with ostomies. Review of the persons who were not included identified populations and issues that have not been well addressed in the literature. These include the special needs of persons who require the services of a caregiver after ostomy creation, persons with significant mental or physical illness, persons with spinal cord injury, and persons discharged to long-term care facilities. Patients with ostomies who are discharged home m a y receive p r i m a r y care from home caregivers. What are these caregivers' perceptions of an ostomy and its management? What are the ostomy teaching needs of caregivers, as compared with those of persons who manage their own colostomies? H o w often must home caregivers come to the hospital to learn ostomy care? Should caregivers be taught alone, or in a group setting? What if a caregiver is unable to learn ostomy care during the patient's hospitalization? What home resources do caregivers need when caring for patients with ostomies? For h o w m a n y visits over what time frame do these fami-
207
208
JWOCN July 1996
Pieper
lies need home nursing care? What are the physical and psychosocial needs of home care providers? Caregiver research is rapidly expanding, yet it is lacking in the ostomy literature. As length of hospital stay continues to decrease, the population continues to age, and persons increasingly have multiple chronic illnesses, ET nurses need to learn more about caregiver needs and discharge planning in relationship to the patient with an ostomy. Studies are also lacking about collaboration between hospital-based ET nurses and home care nurses in facilitating the patient's transition to the home. Spinal cord injuries affect 10,000 persons per year in the United States. 3° These persons tend to be young, single men. It is not known how m a n y spinal cord-injured persons have ostomies. Such ostomies m a y be created as a result of the injury event or for medical reasons. What are the adjustments to ostomy for spinal c o r d injured persons? H o w should ostomy teaching be integrated into the rehabilitation plan? What are the primary pouching issues for persons with spinal cord injury, and do they differ from those of other patients with ostomies? Poor placement and quality of the stoma m a y affect wheelchair mobility and self-care independence. If the stoma is above the level of injury, the person m a y have diaphoresis, which can interfere with adhesion of the pouch. Research is needed to address the specific needs of persons with spinal cord injury and other types of paralysis who have ostomies. The person who has a mental illness diagnosis as well as an ostomy also m a y have special needs. Some persons with mental illness learn quickly and do not need modified teaching plans; others need content divided into small units with much repetition; still others m a y be unable to learn ostomy care. In addition to examining the effect of the mental illness on ostomy teaching and self-care, it is important to consider the effects of the ostomy on the person's mental health status. What type and frequency of discharge follow-up do these persons need? What are the knowledge and understanding levels about ostomy care of psychiatric nurses and physicians? What are the ostomy care needs of persons in psychiatric units? Patients with ostomies are sometimes discharged to long-term care facilities,
where most care is provided by nursifig assistants. What are the educational needs of nursing assistants with respect to patients with ostomies? What are nursing assistants' perceptions of patients with ostomies? What can be done to facilitate the transfer from acute care to long-term care of patients with ostomies? What access do long-term care facilities have to ET nurses? Across the study and n o n s t u d y groups, 76% of the persons were black. H o w ethnically sensitive are ostomy teaching materials? H o w often and for how long do persons of ethnic minority groups appear in ostomy teaching films and booklets? What ethnic groups are represented in ostomy research? Ethnic diversity is needed in ostomy research. Trauma and violence are potential causes of ostomy creation. Do victims of violence with ostomies have different psychosocial needs? Violence and trauma tend to affect y o u n g adults, and the resuiting ostomies are usually temporary. Do these persons need different educational materials? What is the role of ET nurses in support of victims of violence? Researchers need to include persons with ostomies created as a result of nondisease causes in future investigations. A review of the Journal of WOCN from 1992 to 1994 (15 issues) revealed only two research-based articles about patients with ostomies. Pieper 29 completed a retrospective review of patients (n = 44) with ostomies constructed during a 14-month period in a level I trauma center. The patients' perceptions and adjustments are lacking in this study, which focused on victims of violence and their potential needs. Jackson and associates31 studied 12 patients with new ostomies and the registered nurses who cared for them in an examination of the relationship between nurses' perceptions of patients and those patients' satisfaction with nursing care. These authors failed to present demographic information (age, ethnic background, sex, or reason for ostomy creation). Care of the person with an ostomy is a critical aspect of ET nursing practice. Research studies about these patients and their families or caregivers are lacking. Although case reports and articles that primarily focus on h o w to perform care are important, research is critical. With health care reform, ET nurses are chal-
JWOCN Volume 23, Number 4
lenged more than ever before to examine their research-based practice for persons with an ostomies. What research studies could evolve from a "how to" article? What studies should be done about the relationship between stoma placement and construction and quality of life? ET nurses must ask themselves w h y so few research-based articles on ostomies are published, and w h a t is being done to include patients with special needs as well as ethnically diverse groups in research. Tomaselli and colleagues 32 raised several concerns with respect to methodology and sample size about b o d y image research. Because of difficulties in obtaining subjects, multiple sites m a y needed. Would ET nurses be willing to enroll patients in a multisite study and take the time to follow-up? Would institutions allow time for ET nurses to participate in such research? These issues must be addressed.
REFERENCES 1. Pryse-Phillips W. Follow-up study of patients with colostomies. Am J Surg 1971; 122:27-32. 2. Wirsching M, Druner HU, Herrmann G. Results of psychosocial adjustment to long term colostomy. Psychother Psychosom 1975;26:245-56. 3. Eardley A, George WD, Davis F, Schofield PF, Wilson MC, Wakefield J, et al. Colostomy: the consequences of surgery. Clin Oncol 1976;2:277-83. 4. Keltikangs-Jarvinen L, Loven E, Moiler C. Psychic factors determining the long-term adaptation of colostomy and ileostomy patients. Psychother Psychosom 1984;41:153-9. 5. Thomas C, Madden F, Jehu D. Psychosocial morbidity in the first three months following stoma surgery. J Psychosom Res 1984;28:251-7. 6. Thomas C, Turner P, Madden F. Coping and outcome of stoma surgery. J Psychosom Res 1988;32:457-67. 7. Thomas C, Madden F, Jehu D. Psychological effects of stomas. I. Psychosocial morbidity one year after surgery. J Psychosom Res 1987;31:311-6. 8. Martinsson ES, Josefsson M, Ek AC. Working capacity and quality of life after undergoing an ileostomy. J Adv Nurs 1991;16:1035-41. 9. Padilla GV, Grant MM. Quality of life as a cancer nursing outcome variable. ANS Adv Nurs Sci 1985;8:45-60. 10. Druss RG, O'Connor JF, Prudden JF, Stern LO. Psychologic response to colectomy. Arch Gen Psychiatry 1968;18:53-9. 11. McLeod RS, Lavery IC, Leatherman JR, Maryland PA, Fazio VW, Jagelman DG, et al. Factors affecting quality of life with conventional ileostomy. World J Surg 1986;10:474-80.
Pieper 20g
12. Rubin GP. The quality of life with a stoma. BritishJ Hosp M e d 1987;38:300-3, 306. 13. R h e a u m e A, Gooding BA. Social support, coping strategies, and long-term adaptation to ostomy a m o n g self-help group members. J Enterostom Ther 1991;18:1 I-5. 14. C o e M, Kluka S. Concerns of clients and spouses regarding ostomy surgery for cancer. J Enterostom Ther 1988',15:232-9. 15. Kobza L. Impact of ostomy upon the spouse. J Enterostom Ther 1983; 10:54-7. 16. Gloeckner MY, Starling JR. Providing sexual information to ostomy patients. Dis Colon Rectum 1982;25:575-9. 17. Kelly MP. Coping with an ileostomy. Soc Sci M e d 1991;33:115-25. 18. Watson P. Postoperative counseling for cancerlostomy patients. J Enterostom Ther 1983; 10:8491. 19. Klopp AL Body image and self-concept a m o n g individuals with stomas. J Enterostom Ther 1990; 17:98-I 05. 20. Ramer L. Self-image changes with time in the cancer patient with a colostomy after operation. JET Nurs 1992;19:195-203. 21. Smith, DB, Babain RV. Patient adjustment to an ileal conduct after radical cystectomy. J Enterostom Ther 1989;16:244-6. 22. Oberst MT, Scott DW. Postdischarge distress in surgically treated cancer patients and their spouses. RINAH Res Nurs Health 1988;I 1:223-33. 23. C o e M, Kluka S. Comparison of concerns of clients and spouses regarding ostomy surgery for cancer. J Enterostom Ther 1990;17:106-11. 24. Gloeckner MR. Partner reaction following ostomy surgery. J Sex Marital Ther 1983;9:182-90. 25. W a d e BE. Colostomy patients: psychological adjustment at I0 weeks and I year after surgery in districtswhich employed stoma care nurses and districts which did not. J Adv Nurs 1990;15:1297304. 26. Taheri PA, Ferrara JJ, Johnson CE, Lamberson KA, FlintLM. A convincing case for primary repair of penetrating colon injuries. A m J Surg 1993; 166):39-44. 27. Livingston DH, Miller FB, Richardson D. Are the risks after colostomy closure exaggerated? A m J Surg 1989;158:17-20. 28. Pittman DM, Smith LE. Complications of colostomy closure. Dis Colon Rectum 1985;28:836-43. 29. Pieper B. Persons w h o have stomas: violent injury versus disease. JET Nurs 1992;19:7-I I. 30. Price SA, Wilson LM. Pathophysiology: clinical concepts of disease processes. St Louis: MosbyYear Book, 1992. 31. Jackson AL, Pokorny ME, Vincent P. Relative satisfaction with nursing care of patients with ostomies. JET Nuts 1993;20:233-8. 32. Tomaselli N, JenksJ, Morin KH. Body image in patients with stomas: a criticalreview of the literature. JET Nurs 1991;18:95-7.
his article c o m p a r e s persons who were i n c l u d e d in a research study a b o u t living with an ostomy with those who were not included. Persons not inc l u d e d were those who were too physically ill to b e i n d e p e n d e n t in care, persons with paralysis, a n d persons with m e n t a l illness. Research a b o u t persons with ostomies should include an ethnically diverse sample, d e a l with caregiver a n d h o m e care needs, a n d investigate special populations such as those in psychiatric units, rehabilitation units, or longterm care facilities. ET nurses are chall e n g e d to p a r t i c i p a t e in more ostomyrelated research. (J W O C N 1996;23: 205-9)
T
ET nursing began with the provision of care to persons with ostomies. Because ostomy creation changes a person's appearance and method of elimination, it may affect a person's body image, moods, coping, lifestyle, interpersonal relationships, and sexuality. An ostomy poses physical and psychosocial challenges not only for the person with an ostomy but for that person's partner, family, or caregiven Patient, family, and staff education and counseling remain critical components of the ET nurse's role. Research findings help to delineate components of ostomy care, education, and counseling. Every research project has a target population. From this population, the researcher selects a sample according to the study's purpose and design, the accessibility of subjects, and human rights issues. I participated in a study that examined the perceived effect of an ostomy, psychosocial adjustment, coping, reintegration into normal living, and meaning in life for persons with a fecal ostomy (reported in the preceding article). This project gave me the opportunity to explore ostomy-related research, to examine the numbers and types of persons who could not be included in this research, and to consider gaps in ostomy research.
LITERATURE REVIEW Researchers historically have examined what it is like to live with an ostomy. C o m m o n research themes include ostomy-related concerns; psychologic states; quality of life; body image; participation in work, home, and leisure activities; and sexuality. Depression, a frequently reported response to an ostomy/-8 may be short-term or long-term and may be affected by the type of ostomy the person has? Coping responses include denial, stoic acceptance, helplessness and hopelessness, and fighting spiritd -7"s Quality of life has been reported to be low (as among persons with cancer) to improved (as among persons with ulcerative colitis). 9-12 Common concerns include odor, restricted social lives, restricted leisure opportunities, employment, sexual problems, and fear of ostomy care. I" s-7, 1318 Sexual problems have also been related to ostomy creation. 3" 5-7 Concern regarding the ostomy may affect body image and self.concept.19, 2oSome studies have examined partners' concerns related to the ostomy and the importance of these conterns.14, ~5, 18. 21-24Couples may have different patterns of distress and coping with time. Most subjects in reported research have undergone permanent ostomies, except in cases of ostomies created for one stage of a continent diversion procedure.* Wade's research 25 included persons who had temporary ostomies; these persons also had a need for teaching and counseling. Other research about temporary ostomies has focused on the surgical procedure/6-28 and one researcher has examined the needs of persons who have ostomies as a result of violence. 29 Even though multiple issues have been examined in ostomy research, much research remains to be done. Ostomy research results should be read in historical context because ostomy equipment, availability of ET nursing care, and surgical procedures have changed. Sample size has been small in some studies, and ethnic di-
Dr. Pieper is an associate professor and clinical nurse specialist, College of Nursing, Wayne State University, Detroit. Reprint requests: Barbara Pieper, PhD, RN, CS, CETN, FAAN, Associate Professor. Wayne State University. 5557 Cass Ave,, R o o m 337, Detroit, M148202. *References I-4, 8, 10-I I, 14, and 16-18. Copyright@ 1996 by the Wound, Ostemy and Continence Nurses Society. 1071-5754/96 $5.00 + 0
21/I/73480 205
206
JWOCN July 1996
Pieper
T a b l e 1. Descriptive c o m p a r i s o n of study p a r t i c i p a n t s versus n o n p a r t i c i p a n t s (N = 127)
Variable
Nonparticipant (n [] 60)
Participant (n = 67)
40
50
20
]7
Sex Male
Female Ethnicity Black White Age (yr)* Reason for stoma Disease Gunshot wound Traumatic injury Stoma duration Temporary Permanent Disease cause for ostomy formation Cancer Diverticulardisease Othert Discharge site Home Another hospital or rehabilitation unit Long-term care facility Died
54 6 48.3 _+21
43 24 42.3 _+18.9
45 ]3 2
36 28 3
20 40
48 ]9
18 3 24
14 12 I0
37 10 7 6
67 0 0 0
*Mean + SD. "i'lnflammatory bowel disease, bowel obstruction, familial polyposis, incarcerated bowel, or perirectal abscess or fistula.
versity has been limited. Many areas for original and replication research remain.
PURPOSE The purpose of the primary research was t o examine the perceived effect of an ostomy--psychosocial adjustment, coping, reintegration into normal living, and meaning in life--for persons with fecal ostomies (results reported in the preceding article). Three groups of persons who had fecal ostomies were included: those with permanent ostomies as a result of disease, those with temporary ostomies as a result of disease, and those with temporary ostomies as a result of violence. Participants were aged 18 years or older, able to complete their own ostomy care and function independently, able to understand and respond in English, willing to sign a research consent form, and discharged to their homes after acute hospitalization. Persons excluded from the re-
search were those with paraplegia or quadriplegia, severe mental or physical illness, a urostomy, a second ostomy, or an ostomy for a continent diversion. Persons with paralysis were excluded because of issues related to adjustment to paralysis, discharge to a rehabilitative setting before returning home, and potential issues with self-care related to level of paralyzing injury. Severe mental or physical illness raised ethical questions of informed consent. Persons with urostomies were excluded because of lack of research knowledge regarding psychosocial similarities and differences between persons with fecal and urinary ostomies. A second ostomy could influence a person's adjustment. Continent diversions were rarely performed in the facilities used, and these procedures m a y necessitate investigation of a fourth group in terms of adjustment. The number of persons I could not ask to be in the study at one data-collection site (n = 60) was almost equivalent to the number of persons who d i d participate (n = 67). The purpose of this project was to explore h o w study participants differed from nonparticipants.
METHODS A retrospective chart review was completed, and the demographic forms developed for the p r i m a r y research study were used to record information for the 60 persons who were not subjects in the primary study. These forms allowed collection of such background information as age, sex, and ethnicity. Information about the ostomy included the reason for ostomy const-ruction, type of ostomy, and ostomy duration (temporary or permanent). Perioperative concerns such as number of operations, length of stay, and critical care stay were also recorded. All items had face validity.
Statistical Analysis The results are presented w i t h frequencies and means for descriptive purposes.
The ~2 test was used to compare nominal variables between the two groups, and the t test was used when intervals or ratiodependent variables were compared.
RESULTS During the data-collection period from March 1991 to July 1993, 40 men and 20 w o m e n who were primarily black (90%)
JWOCN
Volume 23, Number 4
d i d not qualify as research subjects (Table 1). Their ages ranged from 18 to 91 years (mean 48.3 years, SD 21 years) and d i d not differ significantly from those of the research participants. The reasons for ostomy construction for the nonparticipants were disease (n = 45), gunshot w o u n d (n = 13), and traumatic injury (n = 2). Traumatic injury included rectal d a m a g e from jumping from a car and from impalement on a bicycle bar. Because the number of persons with traumatic injury was small, these subjects were placed with the disease group for statistical analyses. The nonstudy group contained more persons with an ostomy as a result of disease and the study group contained more persons who were shot, (X2 [1, N = 127] = 5.86, p = 0.02). The most common disease in both groups was cancer (n = 18; Table 1). More ostomies were designated as permanent (n =40) than temporary (n =20) in the nonstudy group; the reverse was true in the study group,(x 2 [1, N = 127] = 18.67, p < 0.001). The reasons for exclusion from the prim a r y study are presented in Table 2. The most common reason for exclusion was physical illness (n = 16); some potential participants were too ill to learn ostomy care and thus were not independent in caring for themselves or their ostomies. Many were confined to bed and dependent on a caregiver at home or in an another institution to help with care needs. In addition to physical illness, some persons (n = 11) were being treated for such psychiatric diagnoses as depression, schizophrenia, and personality disorders. Ten persons had a spinal cord injury; adjusting to this injury w o u l d have affected their responses to the study items. The category "ostomy-related situations" (n = 10) referred to persons who had second ostomies, urostomies, ostomy closure before discharge, and to unexpected discharge of the patient before teaching was done. Seven persons were too demented or confused to learn ostomy care, and six persons, who w o u l d have been considered too ill to participate, died before discharge. The discharge destinations of the nonparticipants varied. Although 30 persons lived alone before operation, only 11 were sent home alone at discharge. Twentyfour persons, compared with 21 persons before operation, planned to live with someone. Ten patients were sent to an-
Pieper
Table
2. Primary reason for exclusion as a research p a r t i c i p a n t Cause
n
%
Physically too ill Marked mental illness Ostomy-related situation Spinal cord injury Confused/demented Died
16 11 10 10 7 6
26.7 18.3 16.7 16.7 11.6 10
other hospital or rehabilitation center; seven were discharged to long-term care facilities. The n o n s t u d y group had a higher acuity of illness, as demonstrated by number of operations, time spent in critical care, and length of stay. The nonstudy group underwent significantly more surgical procedures (mean 2.6) than d i d the study group (mean 1.5, t[121] =-3.54, p = 0.001). The nonstudy group spent significantly longer in critical care (mean 10.1 days) than the study group (mean 2.4 days, t[123] = -3.03, p = 0.003), and they had significantly longer hospital stays (mean 24.9 days) than the study participants (mean 15.9 days, t[119] = -3.05, p = 0.003).
DISCUSSION This article compared persons who were and were not included a research study about persons with ostomies. Review of the persons who were not included identified populations and issues that have not been well addressed in the literature. These include the special needs of persons who require the services of a caregiver after ostomy creation, persons with significant mental or physical illness, persons with spinal cord injury, and persons discharged to long-term care facilities. Patients with ostomies who are discharged home m a y receive p r i m a r y care from home caregivers. What are these caregivers' perceptions of an ostomy and its management? What are the ostomy teaching needs of caregivers, as compared with those of persons who manage their own colostomies? H o w often must home caregivers come to the hospital to learn ostomy care? Should caregivers be taught alone, or in a group setting? What if a caregiver is unable to learn ostomy care during the patient's hospitalization? What home resources do caregivers need when caring for patients with ostomies? For h o w m a n y visits over what time frame do these fami-
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lies need home nursing care? What are the physical and psychosocial needs of home care providers? Caregiver research is rapidly expanding, yet it is lacking in the ostomy literature. As length of hospital stay continues to decrease, the population continues to age, and persons increasingly have multiple chronic illnesses, ET nurses need to learn more about caregiver needs and discharge planning in relationship to the patient with an ostomy. Studies are also lacking about collaboration between hospital-based ET nurses and home care nurses in facilitating the patient's transition to the home. Spinal cord injuries affect 10,000 persons per year in the United States. 3° These persons tend to be young, single men. It is not known how m a n y spinal cord-injured persons have ostomies. Such ostomies m a y be created as a result of the injury event or for medical reasons. What are the adjustments to ostomy for spinal c o r d injured persons? H o w should ostomy teaching be integrated into the rehabilitation plan? What are the primary pouching issues for persons with spinal cord injury, and do they differ from those of other patients with ostomies? Poor placement and quality of the stoma m a y affect wheelchair mobility and self-care independence. If the stoma is above the level of injury, the person m a y have diaphoresis, which can interfere with adhesion of the pouch. Research is needed to address the specific needs of persons with spinal cord injury and other types of paralysis who have ostomies. The person who has a mental illness diagnosis as well as an ostomy also m a y have special needs. Some persons with mental illness learn quickly and do not need modified teaching plans; others need content divided into small units with much repetition; still others m a y be unable to learn ostomy care. In addition to examining the effect of the mental illness on ostomy teaching and self-care, it is important to consider the effects of the ostomy on the person's mental health status. What type and frequency of discharge follow-up do these persons need? What are the knowledge and understanding levels about ostomy care of psychiatric nurses and physicians? What are the ostomy care needs of persons in psychiatric units? Patients with ostomies are sometimes discharged to long-term care facilities,
where most care is provided by nursifig assistants. What are the educational needs of nursing assistants with respect to patients with ostomies? What are nursing assistants' perceptions of patients with ostomies? What can be done to facilitate the transfer from acute care to long-term care of patients with ostomies? What access do long-term care facilities have to ET nurses? Across the study and n o n s t u d y groups, 76% of the persons were black. H o w ethnically sensitive are ostomy teaching materials? H o w often and for how long do persons of ethnic minority groups appear in ostomy teaching films and booklets? What ethnic groups are represented in ostomy research? Ethnic diversity is needed in ostomy research. Trauma and violence are potential causes of ostomy creation. Do victims of violence with ostomies have different psychosocial needs? Violence and trauma tend to affect y o u n g adults, and the resuiting ostomies are usually temporary. Do these persons need different educational materials? What is the role of ET nurses in support of victims of violence? Researchers need to include persons with ostomies created as a result of nondisease causes in future investigations. A review of the Journal of WOCN from 1992 to 1994 (15 issues) revealed only two research-based articles about patients with ostomies. Pieper 29 completed a retrospective review of patients (n = 44) with ostomies constructed during a 14-month period in a level I trauma center. The patients' perceptions and adjustments are lacking in this study, which focused on victims of violence and their potential needs. Jackson and associates31 studied 12 patients with new ostomies and the registered nurses who cared for them in an examination of the relationship between nurses' perceptions of patients and those patients' satisfaction with nursing care. These authors failed to present demographic information (age, ethnic background, sex, or reason for ostomy creation). Care of the person with an ostomy is a critical aspect of ET nursing practice. Research studies about these patients and their families or caregivers are lacking. Although case reports and articles that primarily focus on h o w to perform care are important, research is critical. With health care reform, ET nurses are chal-
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lenged more than ever before to examine their research-based practice for persons with an ostomies. What research studies could evolve from a "how to" article? What studies should be done about the relationship between stoma placement and construction and quality of life? ET nurses must ask themselves w h y so few research-based articles on ostomies are published, and w h a t is being done to include patients with special needs as well as ethnically diverse groups in research. Tomaselli and colleagues 32 raised several concerns with respect to methodology and sample size about b o d y image research. Because of difficulties in obtaining subjects, multiple sites m a y needed. Would ET nurses be willing to enroll patients in a multisite study and take the time to follow-up? Would institutions allow time for ET nurses to participate in such research? These issues must be addressed.
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