Family Functioning, Perceived Social Support, and Adaptation to a Stoma: A Descriptive, Cross-sectional Survey

The creation of a stoma is a life-saving surgical procedure that requires major adjustments.

Purpose: The aim of this study was to examine the relationships among family functioning, perceived social support, and adaptation to living with a stoma. Method: A descriptive, cross-sectional survey was conducted between October 2013 and June 2015 among consecutive patients who visited the stomatherapy unit of a university hospital in Ankara, Turkey, for regular follow-up visits. Eligibility criteria stipulated participants must be at least 18 years of age, literate, live with family, have their stoma for at least 2 months, and be willing to participate. Instruments included a demographic and stoma-related information form, the Multidimensional Scale of Perceived Social Support (MSPSS; subscale range 4–28, total score range 12–84; higher scores indicate better perceived support), the McMaster Family Assessment Scale (FAS; range 1.32–3.15; higher scores indicate deteriorating family function), and the Ostomy Adjustment Inventory Scale-23 (OAI-23; range 19–85; higher scores indicate increasing adaptation). Data were entered into statistical software for analysis that included descriptive statistics and Mann-Whitney U and Spearman correlation tests. Results: Among the 75 participants (mean age 55.4 ± 12.96 years; average stoma duration 3.77 ± 4.97 years), 41 (54.7%) were male, 59 (78.7%) were married, and mean duration of living with a stoma was 3.77 ± 4.97 years. The average MSPSS score was 61.0 5 ± 15.00, the average FAS score was 1.98 ± 0.38, and the average OAI-23 score was 49.39 ± 14.62, all within the “moderate” range for their measures. Stoma complications, time since surgery, stoma self-care, marital status, whether the surgery was planned or an emergency, and employment status significantly affected MSPSS, FAS, and OAI-23 scores. As the FAS scores increased, the MSPSS (r = -.399; P = .001), and OAI-23 (r = -.300; P = .009) scores decreased. Conclusion: The results suggest wound, ostomy, continence nurses should assess and encourage familial and social support. Prospective studies examining the effect of familial and social support on stoma adjustment are warranted. 

Turkey and worldwide, many patients require stoma surgery every year, especially as a result of colorectal and bladder cancers. According to 2018 GLOBACON data,^1,2 the prevalence and mortality rates of colorectal cancers for both genders were 10.2% and 9.2%, respectively. According to 2016 cancer statistics for Turkey, colorectal cancers were the third most frequent cancer type for both men and women.³ 

Creating a stoma is a common practice in the surgical treatment of gastrointestinal and urinary tract cancers, inflammatory intestinal diseases, and trauma.^4,5 Although the creation of a stoma is a life-saving surgical procedure, it can lead to a variety of physiological, social, and psychological problems for the patient, adversely affecting the process of adjustment to their new normal.^5-7 In their descriptive, cross-sectional study of 60 individuals and 60 spouses of individuals with a stoma, Aktaş and Baykara⁸ found 73.4% of the individuals with a stoma experienced physical problems, 60.0% experienced psychological problems, and 43.3% stated their relationship with their spouse was negatively affected. In their methodological examination of 7 research studies, Taylor and Morgan⁹ found physical, psychological, and social problems were commonly experienced by individuals with a stoma and had a negative impact on quality of life. The qualitative and quantitative examination by Ayaz-Alkaya¹⁰ of 27 research studies that examined the psychosocial problems of individuals with a stoma concluded patients experienced decreasing body image and self-esteem, anxiety, and depression and confronted sexual problems such as impotence, dyspareunia, frigidity, and sexual dysfunction that had a negative impact on their adaptation to their stoma. Ceylan and Vural¹¹ conducted a phenomenological study among 19 individuals with a stoma that found patients experienced social isolation and difficulties in their daily lives and that social support systems are important in overcoming problems. The descriptive study by Özşaker and Yeşilyaprak¹² (N = 54 individuals with a stoma) determined that 16.7% lost their appetite due to the smell; 14.8% experienced change in their relationships with their families, friends, and neighbors; 7.42% felt ashamed due to the stoma; and 20.8% experienced difficulties adapting. Changes in physical appearance and physiological problems can negatively affect the individual’s body image, make him/her feel different from others and/or feel ashamed of him or herself, fear being rejected by family and friends, and limit social activities, relationships and professional roles.^8,13-15 

Descriptive studies have found individuals with a stoma meet less frequently with close friends after surgery, marital problems increase, leisure and social activities and working hours and productivity decrease, and career changes often are observed.^8,15 

In Turkey, along with the routine surgery preparations, stoma sites often are marked preoperatively in institutions with stomatherapy units. Postsurgical care includes step-by-step care instructions and discharge teaching (ie, nutrition, discharge, bathing, return to work, sexuality, worship, protection from complications) is provided. Following discharge, patients are routinely followed by the stomatherapy department after 1 week, with subsequent visits 1, 3, 6, and 12 months and annually thereafter.  Patients who experience difficulties or complications are seen more frequently. Family involvement is encouraged.

Family and other social support resources play an important role in decreasing post stoma-creation problems and helping individuals with a stoma adapt.^8,16 In recent years, despite significant developments in surgical techniques and stoma care products and the increase in the number of nurses who specialize in stoma care, descriptive studies have found the majority of patients still have problems with adaptation,^17-19 suggesting a need for social  support of individuals with a stoma. The study by Aktaş and Baykara⁸ found the attitude of spouses toward the individual and the stoma had a direct impact on the body image of the ostomate. Qualitative research by Cetolin et al²⁰ among 12 individuals with a stoma noted that family and social support had a positive impact on individuals trying to regain their self-esteem. However, in Turkey, no studies have been conducted to determine the effect of family support on patient adaptation. The purpose of this study was to determine the relationships among family functioning, perceived social support, and adaptation to living with a stoma.  

Design and sample. A descriptive, cross-sectional survey was conducted at the stomatherapy unit connected to the general surgery department of a university hospital in Ankara, Turkey, between October 2013 and June 2015. Three (3) wound, ostomy, continence (WOC) nurses working in the stomatherapy unit provided training, counseling, and care services for inpatients and their relatives beginning in the preoperative period and served all clinics of the hospital, including the ileostomy, colostomy, and urostomy clinics. After the patient had been discharged, the same services continued for outpatients.

At the start of the study, hospital records indicated 100 patients had presented to the stomatherapy unit within the previous year. The sample size was calculated to be 80 according to the formula used to determine the sample size for a known research universe. The study was conducted among individuals who were receiving care in the stomatherapy unit and met the inclusion criteria, which stipulated study participants must be at least 18 years of age, literate, live with family, have had a stoma for at least 2 months, and be willing to participate in the research. Patients with a diagnosis of mental illness, intellectual disability, and/or deterioration of cognitive abilities were excluded. All consecutive patients who visited clinic starting in October 2013 were invited to participate in the study during the their regularly scheduled clinic visit. 

Data collection tools. The Information Form for the Individual with a Stoma, the Multidimensional Scale of Perceived Social Support (MSPSS), the McMaster Family Assessment Scale (FAS), and the Ostomy Adjustment Inventory scale (OAI-23) were used as data collection tools in the study.

Information Form for the Individual with Stoma. This form was developed based on the literature and the experience of the researchers. The form contained 6 questions regarding sociodemographic characteristics (ie, age, gender, marital status, graduation status, working status, income status) and 10 questions about stoma-related characteristics (stoma duration, surgery type, status of preoperative stoma site marking, stoma type, preoperative information, stoma nature, reason for the stoma opening, who cared for the stoma, stoma complications, and support received).

Multidimensional Scale of Perceived Social Support (MSPSS). This scale was developed by Zimet et al²¹ and adapted to Turkish by Eker et al.²² The MSPSS comprises 12 items in 3 groups of sources of support; each includes 4 items: 1) family (items 3, 4, 8, and 11), 2) friends (items 6, 7, 9, and 12), and 3) special person (items 1, 2, 5, and 10). Each item is scored on a scale of 1 to 7, where  1 = very strongly disagree, 2 = strongly disagree, 3 = mildly disagree, 4 = neutral, 5 = mildly agree, 6 = strongly agree, and 7 = very strongly agree. The total score for the subscale is the sum of the 4 items (range 4–28); subscale scores are summed for the total score (range 12–84). The higher the score obtained, the higher the perceived social support; a low score indicates no perception of support or that support is lacking. Eker et al²² found the Cronbach’s alpha coefficient for the total score was 0.89; the Cronbach’s alpha coefficient was 0.85 for the family subscale, 0.88 for the friend subscale, and 0.92 for the special person subscale. In this study, the total Cronbach’s alpha coefficient was 0.87.

McMaster Family Assessment Device (FAS). This instrument was developed by Epstein et al,²³ and its validity and reliability for Turkey was determined by Butler.⁴ The 60-question, self-notification scale comprises statements presented in 7 subscales: problem-solving (items 2, 12, 24, 38, 50, and 60), communication (items 3, 14, 18, 22, 29, 35, 43, 52, and 59), family roles (items 4, 8, 10, 15, 23, 30, 34, 40, 45, 53, and 58), being able to react emotionally (items 9, 19, 28, 39, 49, and 57), due consideration (items 5, 13, 25, 33, 37, 42, and 54), behavioral control (items 7, 17, 20, 27, 32, 44, 47, 48, and 55), and general functions (eg, “When we face trouble and sadness, we support each other”; and “We don’t tell each other about our troubles at home”; items 1, 6, 11, 16, 21, 26, 31, 36, 41, 46, 51, and 56). The number of items in the subscales ranges from 6 to 12. The instrument enables a family to evaluate how it functions according to the perceptions of family members. The participant evaluates the items as: 1 = totally agree, 2 = mostly agree, 3 = agree a little, or 4 = disagree. Subscale items are summed for the subscale score, and the total score for the scale is obtained by summing the subscale scores and dividing the total by 7. Thus, individual scale scores range from 1 (best functioning) to 4 (worse functioning). An increase in score for each subscale indicates a greater degree of deterioration in functioning. In addition, a score of 1 indicates that the situation is “healthy” and a score of 4 indicates that it is “unhealthy.” A score of 2 constitutes the medium value. A score of ≤2 can be evaluated as “healthy,” and a score of >2 as “unhealthy.” In this study, the total Cronbach’s alpha coefficient was 0.89.

Ostomy Adjustment Inventory-23 (OAI-23). The OAI-23 was developed by Simmons et al²⁴ in order to determine the level of adaptation of individuals with a stoma. The validity and reliability of the scale in Turkey was assessed by Karadag et al.²⁵ The instrument comprises a 23-item self-assessment scale consisting of 4 subfactors: accepting (items 1, 3, 4, 6, 9, 14, 15, 19, and 23), anxiety/concern (items 12, 13, 17, 20, and 21), social integration (items 5, 7, 8, and 11), and anger (items 2 and 10). Three (3) additional items (16, 18, and 22) are not included in any subfactor. Each item on the scale is evaluated on a 5-point Likert type scale from 0 to 4 (definitely agree, agree, not sure, disagree, definitely disagree); a high score for each item shows that adaptation is increasing. The 12 items in the scale that contain negative statements (2, 5, 7, 8, 10, 11, 12, 13, 16, 17, 18, and 21) are scored in reverse. Items in the subscale are summed, and the total score is obtained by the sum of all the subscale scores. Thus individual scale scores range from 0 (worst adaptation) to 92 (best adaptation). The reliability coefficient of the overall scale was 0.874, and the correlation coefficient obtained by the test-retest method was 0.766. In this study, the total Cronbach’s alpha coefficient was calculated as 0.86.²⁵

Data collection and analysis. Data were collected in the stomatherapy outpatient unit. The patients completed the data collection tools used in this study after they had received the necessary explanations during a face-to-face interview. The study continued until the sample size was reached. In the end, 80 patients met the study criteria, but 5 refused to participate; as such, 75 patients who met the patient selection criteria took part in the study (participation rate 93.8%). When the target sample size is not reached in research, post hoc power analysis can be performed to calculate the power of the study; the calculated power should be at least 80%.^26,27 Post hoc power analysis was performed with the G Power 3.1 program in order to eliminate doubts about the adequacy of the sample size, and the power of the study was found to be 86%, showing a sufficient sample size for the study.

Data were input directly from the study instruments into SPSS, version 21 (IBM Corp, Armonk, New York). Number and percentile calculations, Mann-Whitney U test, and Spearman correlation analysis were performed. The Mann-Whitney U test was used to compare the differences between the patients’ mean scores on the OAS, MSPSS, and FAS according to their sociodemographic characteristics. Spearman correlation analysis was performed to evaluate the relationship between these scales. Statistical significance was accepted at P <.05.

Ethical considerations. Institutional Review Board (IRB) approval was obtained from the university (No:77082166-604.01.02). The second stage involved one-on-one interviews with patients presenting at the stomatherapy unit, during which their written consent was obtained following an explanation of the aims of the study, the manner of application, the content of the data collection tools, and the confidentiality of personal information (each participant’s personal information was collected by numeric code to ensure confidentiality, and the identity of the participants was not identified in the collected raw data). Patients who voluntarily consented to participate were enrolled in the study.

Demographic/stoma-related information. Among the 75 participants (mean age 55.4 ± 12.96 [range 28.0–78] years), 41 (54.7%) were male, 59 (78.7%) were married, 46 (61.3%) were middle school/high school graduates, 58 (77.3%) were unemployed, and 65 (86.7%) had a middle/low income. The mean duration of living with a stoma was 3.77 ± 4.97 years (range   2 months to 21 years), 49 patients (65.3%) had a planned stoma operation, 40 (53.3%) had a unmarked preoperative stoma region, 66 (88%) had been informed before the operation, 59 (78.7%) had a stoma caused by cancer, 35 (46.7%) had a colostomy, 41 (54.7%) had a permanent stoma, 44 (58.7%) performed their own stoma care, 46 (61.3%) had not experienced any complications, and 72 (96%) received the most support from family after the stoma (see Table 1 and Table 2). 

Instrument scores. The MSPSS, FAS, and OAI-23 scores were compared according to the patient/stoma characteristics. Among these characteristics, marital status, working status, surgery type,  duration of living with a stoma, status of developing complication, and stoma care performed by himself/herself were significant variables. Differences in age, gender, graduation status, income status, status of preoperative stoma site marking, preoperative information, reason for stoma, stoma nature, and most supported person were not significant. The average scores for the MSPSS, FAS, and OAI-23 were, respectively, 61.05 ± 15.00 (range 24–84), 1.98 ± 0.38 (range 1.32–3.15), and 49.39 ± 14.62 (range 19–85) (see Table 3).

MSPSS. The average special person scores of patients with a stoma duration of 1 year or less and patients who cared for their own stoma were lower than the average of the others. The family subscore of patients with complications after stoma surgery was lower than those without complications (see Table 4).

FAS. The mean FAS problem-solving subscale score was higher in single patients than in married patients (z = -2.022; P = .043). Patients having emergency stoma surgery had higher FAS due consideration average subscale scores than persons for whom surgery was planned (z = -2.406; P = .016) (see Table 5).

OAI-23. The average OAI-23 social compliance subscale score for nonworking patients was lower than that of persons who were employed (z =-2.652; P = .008). The average score for the OAI-23 anger subscale was higher for patients with as opposed to without complications (z = -2.636; P = .008). The average anxiety/concern subscale scores of patients who performed stoma care themselves was higher than for those whose stoma was cared for by others (z = -2.233; P = .026). The average total score of patients whose stoma was cared for by others (z = -2.515; P = .012) and the average score for the social integration subscale were lower than for those who did the care themselves (z = -2.017; P = .044) (see Table 6).

A weak negative relationship was noted among the scores for the MSPSS, FAS, and OAI-23. As the FAS scores increased, the MSPSS (r = -.399: P = .001), and OAI-23 (r = -.300; P = .009) scores decreased. No statistically significant correlation was between the scores for the OAI-23 and the MSPSS (r = 0.171; P = .142) (see Table 7). 

In terms of the effect of family functioning and perceived social support on the adaptation of individuals with a stoma, study participants were found to have moderate adaptation (see Table 3). The multicenter descriptive study conducted by Karadağ et al¹⁴ (N = 135) found that OAI-23 average scores of individuals in the first and sixth months after the opening of stoma were 48.63 ± 13.75 and 50.59 ± 13.89. In their descriptive, cross-sectional study (N = 122), Gautam and Poudel²⁸ found the average OAI-23 score was 40.52 ± 13.16. The descriptive study by Cheng et al²⁹ (N = 54) found the OAI-23 average score for individuals with a permanent colostomy was 45.112 ± 13.358. These findings are consistent with current study findings. 

In the current study, the average MSPSS score for individuals with a stoma was 61.05 ± 15.00 (range 24–84) (see Table 3), indicating good perceived social support. This study found that the level of perceived social support increased with increasing stoma duration; individuals with a stoma perceived significantly more social support after the first year (see Table 4).  A descriptive study by Leyk et al³⁰ conducted in Poland among 128 patients with a colostomy found that social support increased quality of life (r = 0.361; P = .000029). The same study also showed that although the social support experienced by an individual with a stoma for more than 1 year did not make any significant difference, these patients felt social support made positive contributions to their quality of life. In a quantitative study by Karabulut et al³¹ (N = 50), individuals who had a stoma for more than 12 months were found to have higher stoma adaptation scores than individuals who had a stoma for less than 12 months. Individuals with a stoma experience the process of adapting their own feelings, accepting their current situation, and living with a stoma during the first year. In this period, they also may experience problems such as addictive behaviors, social isolation, sexual problems, and damage to their body image.¹⁷ The resocialization of individuals with a stoma may start after these issues have been addressed and may suggest why, in the current study, the perception of individuals with a stoma of the social support available increased after the first year. 

Stoma complications cause patients to experience many physical, psychological, social, and economic problems.^17,32,33 This situation can affect how individuals with a stoma adapt to their new life and increase the anger they feel. In the current study, individuals with similar problems had a lower sense of social support and a greater degree of anger than others. In this study, the rate of development of stoma complications was 23.3% (see Table 2), and the perception of social support from family members was lower in those who had not have stoma complications (see Table 4). Patients who had stoma complications experienced significantly higher levels of anger in the adaptation process than those who did not experience complications (see Table 6). In the multicenter study by Karadag et al,²⁵ the level of  adaptation to a stoma of patients who developed complications 1 year after the stoma had opened was found to be lower than in those without complications. Xian et al¹⁶  (N = 1010) found social support and total adjustment scale scores were lower for individuals who develop peristomal complications. In an analytical, cross-sectional study conducted among 41 ostomy patients, Jayarajah and Samarasekera¹⁹ found the level of deterioration in body image of individuals with a stoma was higher in persons with, as opposed to those without, complications.  

In the current study, it was determined that special person perception scores of the individuals who performed stoma care themselves were higher than those who did not perform their own stoma care (see Table 4). In addition, the levels of adaption of individuals who took care of their own stoma were higher in the study. Although these individuals had a higher degree of anxiety/concern than those who did not care for their own stoma, they were more successful in terms of social adaptation (see Table 6). Xian et al¹⁶ determined that the outcomes for individuals who cared for themselves were better. Cheng et al²⁹ found that if an individual with a stoma takes care of him/herself, this may be an indication that he/she has been through the prestages of care, such as seeing and touching the stoma, and also may be an indication of the efforts the individual has made to adapt to living with the stoma.

The marital status of individuals with a stoma has been determined to affect problem-solving within the family (see Table 5). Single individuals were found to have lower problem-solving abilities than married ones. Altschuler et al³⁴ found that among 30 women, most received support from their husbands, and this had a positive effect on their adaptation to their stoma. The quality-of-life scores also showed a positive trend when the ostomate received support from his/her spouse.  

In this study, the being able to react emotionally subscale scores of family functionality scale of the patients with emergency stoma surgery were lower than persons who had planned stoma surgery. In terms of due consideration, the type of stoma surgery affected family functioning. Families of individuals who had to have emergency stoma surgery were found to have lower perceived due consideration scores than those whose stoma surgery was planned (see Table 5). 

Karadağ et al¹⁴ administered the OAI-23 twice to assess adjustment in participants: the first time within 1 month of the stoma operation and the second time within 6 months of stoma creation or immediately before the stoma was closed in persons with a temporary stoma. The OAI-23 scores of patients with planned stoma operations were higher (first measurement: 48.12 ± 13.43;  second measurement: 50.73 ± 13.96) than the scores of individuals whose surgeries were unplanned. Baykara et al⁵ found 40% of persons undergoing urgent surgery experienced complications versus 31.1% among persons having planned operations, a statistically significant difference. In a case report by Celik et al³⁵ in which data were obtained through an indepth interview, the creation of a stoma was noted to affect all family members, that the family should be included in the process of adaptation, and that the process of adapting started with preoperative information. For this reason, individuals in this study who underwent emergency stoma creation may not have been supported by their families to the extent they expected.  

In the current study, patients who were employed adjusted to their stomas better than unemployed patients (see Table 6). Karadağ et al¹⁴ found the initial OAI-23 scores of unemployed patients were significantly lower than those of employed patients. These scores increased significantly in subsequent evaluation of adjustment (P <.05).  One might hypothesize that returning to work may contribute to an individual’s adaptation to his/her stoma. 

Perception of social support and adaptation to the ostomy in this study was higher when family functioning scores of the individuals with a stoma increased (see Table 7). Ceylan and Vural¹¹ found the support of the family is an important factor in adapting to living with a stoma. In their phenomenological study of 467 people with mixed stomas, Popek et al³⁶ found families played a very important role in terms of psychosocial support. In the phenomenological study by Cengiz and Bahar³⁷ (N = 12), individuals who had an ileostomy or colostomy stated their families were an important factor in social adjustment. Increasing family functionality seems to support the individual’s perception of social support and adaptation to the stoma. 

The study was conducted at the stomatherapy unit connected to the general surgery department of a university hospital in Ankara, Turkey; therefore, this study is limited to only 1 hospital during a limited time frame and a small number (75) of patients.

A descriptive, cross-sectional survey of 75 ostomates in Turkey determined that FAS scores were higher in persons who were single than those who were married and higher in persons undergoing an emergency operation than persons undergoing a planned operation, indicating these issues may negatively impact adjustment to the stoma. In addition, the scores obtained using the OAI-23 scale were found to be higher in persons who were employed, persons who did not develop complications, and persons taking care of their stoma on their own, indicating adjustment. The MSPSS were higher in persons who did not develop stoma-related complications and in persons who had a stoma for more than 1 year. The ostomate’s perception of social support and adaptation to the ostomy was more positive with perceived good family functioning. In addition, factors such as presence of complications, time since stoma creation, self-care, marital status, whether the surgery was planned or an emergency, and employment status influenced scores on the study instruments. The results of this study suggest that activities aimed at increasing familial and social support for individuals with a stoma may increase their adaptation to the ostomy and facilitate their ability to cope with current or potential problems. As such, WOC nurses should include systematic practices to facilitate familial and social support as  an important component the patient plan of care.

Dr. Baykara and Dr. Demir are Associate Professors, Gazi University, Faculty of Health Science, Department of Nursing, Ankara, Turkey. Dr. Karadag is a Professor, Koç University, Faculty of Nursing, Istanbul, Turkey. Please address correspondence to: Zehra Göçmen Baykara, PhD, RN, Associate Professor, Gazi University, Health Sciences Faculty, Department of Nursing, Beşevler/Ankara, Turkey 06500; email: gocmenzehra@yahoo.com.