Relationships Among Self-Care Agency, Health Perceptions, and Activities of Daily Living in Patients After Tracheostomy: A Cross-sectional Multisite Study

BACKGROUND: Patients who have undergone tracheostomy may feel weak, perceive a change in their health status, and have difficulty performing activities of daily living (ADL) following hospital discharge. PURPOSE: To investigate the relationships among self-care agency, health perception, and ADL in patients after tracheostomy. METHODS: A cross-sectional multisite descriptive study was conducted between December 31, 2019, and March 31, 2020. The sample consisted of 123 patients discharged from 3 hospitals in different regions of Turkey who agreed to participate in the study, were discharged with a tracheostomy, and received home care for at least 1 month (maximum 3 months) after discharge. The Sociodemographic Characteristics Form, the Self-Care Agency Scale (SCAS), Perception of Health Scale (PHS), and Activities of Daily Living (ADL) Scale were used and completed during face-to-face interviews. Descriptive statistics, independent sample t-test, analysis of variance, and Pearson correlation analysis were used to analyze data; P < .05 was accepted as the level of significance. RESULTS: Sixty-three (63) of 123 patients (51.2%) were 65 years and older, 86 (69.9%) were male, and 62 (50%) did not receive regular outpatient care. Most underwent surgery < 45 days ago (69; 56%), had cancer (92; 75%), and spent between zero and 185 US dollars per month on tracheostomy care (94; 76%). Compared with patients who received regular outpatient care, SCAS, PHS, and ADL scores were significantly lower (P < 0.05) in patients who did not receive this care. Overall scores showed moderate self-care agency and health perception, and the average ADL scores (14.92 ± 3.05) were in the independent range. Statistically significant positive correlations were found between health perception and self-care agency (r = 0.628; P = .001), health perception and ADL (r = 0.238; P = .008), and self-care agency and ADL (r = 0.461; P = .001). CONCLUSION: Patients who underwent tracheostomy had moderate SCAS and PHS scores, were able to perform ADL independently, and the scores were correlated. Patients with access to outpatient care had significantly higher SCAS, PHS, and ADL scores than patients who did not. Follow-up care may affect all dimensions of health and well-being

Tracheostomy is a surgical procedure for creating an opening at the third or fourth cartilage ring in the anterior wall of the trachea to provide airway patency and is regarded as the oldest known life-saving method.^1–3 A tracheostomy procedure is performed more frequently in patients with laryngeal cancer to extend their lives and improve their quality of life.^4,5 This results in increased use and cost of health services; in addition, patients are often discharged from the hospital before they have fully recovered.⁶ According to Freeman’s care guide⁷ and Dawson’s review article,⁴ postsurgical care of a tracheostomy involves a complex process that requires knowledge, skills, and time on behalf of patients and caregivers. Patients discharged from the hospital may feel weak, perceive a change in their health status, and have difficulty performing activities of daily living (ADL) at home.⁸

The ability of individuals to meet their basic needs and perform necessary activities is defined as self-care agency, which can be affected by factors such as sociodemographic characteristics and perceived health status.^9–11 It is important for patients to develop self-care agency and to perceive themselves as healthy so that they can adapt to changing living conditions and perform ADL after tracheostomy. There are several studies in the literature that identified factors affecting self-care agency, perceived health, and ADL in different patient groups.^9–13 In a descriptive study by Kurban and Metin Akten⁹ with 149 patients who underwent hemodialysis, self-care agency was found to be moderate and some sociodemographic characteristics (being single, drinking alcohol, having a low income, graduating only from primary school, having an extended family) were found to negatively affect self-care agency; a positive correlation was found between self-care agency and quality of life. In a cross-sectional descriptive study by Yilmaz et al¹⁰ with 600 patients who were treated in a university hospital, health perception levels of patients who underwent surgery (general surgery, orthopedics, urology, ophthalmology, plastic surgery, cardiovascular surgery, neurosurgery, chest surgery, otorhinolaryngology) were found to be moderate, and their health perceptions were found to be negatively affected by some sociodemographic characteristics (being single, having chronic illness, graduating only from primary school). In a descriptive study by Gümüş and Ünsal¹¹ conducted with 200 individuals with osteoarthritis, it was found that individuals were most dependent on others for ADL related to continence and that advanced age and having a long-term chronic disease significantly increased dependence on others for ADL.

Compared with other health care professionals, nurses spend the most amount of time with patients and their families, providing evaluations and appropriate interventions. Therefore, it is important for nurses to have knowledge about self-care agency, ADL, perceived health, and competencies of patients with tracheostomy as well as the relationships among those factors. However, the authors could not find a study in the literature that investigated self-care agency, perceived health, ADL, and the relationships among them in patients with tracheostomy. Thus, the current study aimed to investigate those factors and the relationships among them in patients with tracheostomy. 

Study design and sample. In this cross-sectional multisite descriptive study, data were collected between December 31, 2019, and March 31, 2020, in Turkey. The study population consisted of 180 patients who underwent tracheostomy in 3 university hospitals’ otorhinolaryngology services, who were discharged with a tracheostomy, and who continued home care for at least 1 month and at most 3 months after discharge. Patients were eligible if they agreed to participate in the study voluntarily, had no sensory or hearing loss, were age 18 years or older, were literate, and continued home care for 1 to 3 months after discharge. All consecutive patients were invited to participate in the study prior to discharge; telephone numbers and addresses were obtained from patients who chose to participate and met the inclusion criteria. Interviews were conducted at their homes within 1 to 3 months after they were discharged. As a result of the power analysis performed (according to 180 patients), the sample size of the study that reflected the population was determined to be 123 individuals, with a 95% confidence interval, 0.05 margin of error, and a degree of impact of 0.80. The sample consisted of 123 patients with tracheostomy who met the research inclusion criteria and were reached on the specified dates. 

Ethics committee approval. Before the start of the study, institutional permission was obtained from the hospitals where the research was conducted, and ethics committee approval was obtained from the Regional Public Hospital’s Ethics Committee for Non-Interventional Clinical Research. In addition, the purpose, methods, and expected benefits and risks were explained to the patients, and their written informed consent was obtained.

Data collection methods. The data were collected by the researcher using paper-and-pencil questionnaires via face-to-face interviews. Interviews were conducted during home care visits, and each interview took approximately 20 to 30 minutes. Interviews were conducted once, and all took place between 1:00 PM and 4:00 PM. In addition, patients were given the telephone number of the researcher to contact as needed regarding care practices and problems encountered.

Data collection tools.

The Sociodemographic Characteristics Form. This form was developed by the researchers according to the literature.^2,4–6,8,14 Expert opinions were obtained from 1 instructor in the Surgical Diseases Nursing Department, 1 instructor in the Fundamentals of Nursing Department, 2 instructors in the Department of Public Health Nursing, and 1 physician in the Otorhinolaryngology Department regarding the items developed, and changes were made in line with their recommendations. The form contains 15 items encompassing patient-specific information about the place of tracheostomy surgery, date of tracheostomy surgery, date of discharge with tracheostomy, regular outpatient care, sex, age, marital status, body mass index (BMI; calculated by measuring height and weight by the same researcher and using the same measurement tools at each patient interview), education level, income level, amount of money allocated to care, health insurance, smoking status, presence or absence of chronic disease, and reason for tracheostomy.

Self-Care Agency Scale (SCAS). The scale used to measure self-care ability of an individual to care for himself or herself was the 35-item Turkish Short Form of the scale developed by Kearney and Fleischer,¹⁵ which consisted of 43 items. The Turkish validity and reliability study of this scale was conducted by Nahcivan.¹⁶ The scale focuses on the self-assessment of individuals about their self-care activities. Each item is scored in the range of 0 to 4. The individuals’ self-care orientation is determined by their responses on the 5-point Likert-type scale. Participants scored each item with responses ranging from 0 = “very uncharacteristic of me” to 4 = “very characteristic of me.” On the Turkish version of the scale, 8 items (third, sixth, ninth, 13th, 19th, 22nd, 26th, and 31st items) include negative statements and are reverse-coded. The maximum score is 140 points. Higher scores on the scale indicate an increased self-care agency and ability. There is no cut-off value.¹⁶

ADL Scale. The scale used to evaluate ADL in persons with chronic conditions and the older population was developed by Katz et al,¹⁷ and its Turkish validity and reliability study was carried out by Yardimci.¹⁸ The scale is focused on 6 activities that include transferring, continence, bathing, dressing, toileting, and feeding. Each activity is scored using a 3-point rating scale as: dependent or unable to perform activity independently (3), partially dependent or requiring some assistance (2) and independent or being able to perform activity indepently (1). On the ADL scale, a score of 0 to 6 points is considered dependent, 7 to 12 points is considered partially dependent, and 13 to 18 points is considered independent; dependency decreases as the score increases.¹⁸

Perception of Health Scale (PHS). This scale measures previous health, current health, health outlook, resistance/susceptibility to disease, health concern, disease orientation, denial of patient role, and attitude toward seeing a doctor. The 15-item, 5-point Likert-type scale was developed by Diamond et al¹⁹ to evaluate health perception, and its Turkish validity and reliability study was carried out by Kadioğlu and Yildiz.²⁰ The scale is focused on the following 4 subdimensions: center of control (minimum, 5; maximum, 25), self-awareness (minimum, 3; maximum, 15), certainty (minimum, 4; maximum, 20), and importance of health (minimum, 3; maximum, 15); the sum of the scores from the subdimensions gives the total health perception score. The items numbered 1, 5, 9, 10, 11, and 14 are positive attitude statements, whereas the items numbered 2, 3, 4, 6, 7, 8, 12, 13, and 15 contain negative statements. Positive statements are scored using the following points: 5 = strongly agree, 4 = agree, 3 = neutral, 2 = disagree, and 1 = strongly disagree. The negative statements are reverse-coded. The lowest and highest total scores of the scale are 15 and 75, respectively. High scores on the scale indicate that individuals perceive their health positively, and low scores indicate that individuals perceive their health negatively.²⁰

Data analysis. Data were gathered from patient interviews (demographic data and outcomes measures) and entered into SPSS for Windows version 22.0. BMI was grouped as underweight (< 18.50 kg/m²), healthy (18.50–24.99 kg/m²), pre-obese (25.00–29.99 kg/m²), and obese (> 30.00 kg/m²). The minimum monthly wage in Turkey is 373 US dollars (USD), and the poverty threshold in Turkey is 185 USD. Because of that, monthly income and monthly budget for tracheostomy care were grouped into 3 outcomes: 0–185 USD, 186–373 USD, and ≥ 373 USD. According to the inclusion criteria, patients had been receiving home care for 1 to 3 months; therefore, time since tracheostomy surgery was grouped into 2 outcomes (< 45 days and ≥ 45 days) In the statistical analysis of the data, percentiles, independent sample t-test, analysis of variance, and Pearson correlation analysis were used. P < .05 was accepted as the level of significance.

A total of 123 patients who met the inclusion criteria were included in the study. Of these 123 patients, 69.9% were male, 51.2% were age 65 years and older, 83.7% were married, 41.5% had healthy BMI, 47.2% were primary school graduates (5 years of schooling), 63.4% had health insurance, 53.7% had a monthly income of 373 USD or more, 76.4% had an amount of money allocated to tracheostomy care < 185 USD, 49.6% regularly went to the hospital for outpatient care, 68.3% did not use tobacco, 49.6% had a chronic disease, and 74.8% had a tracheostomy due to cancer. More than half (75.6%) were discharged less than 2 months ago, 48.8% of patients were from Turgut Ozal Medical Center, and 56.1% had tracheostomy surgery that had taken place < 45 days previously (Table 1).

The differences between 1) sex, 2) BMI, 3) health insurance, 4) regular outpatient care, 5) tobacco use, 6) presence or absence of chronic disease, and 7) time since tracheostomy surgery and PHS scores were all statistically significant (P < .05) (Table 2, Part 1 and Part 2). The PHS scores of female patients were 42.45 ± 6.36, and the PHS scores of male patients were 39.98 ± 5.82. PHS scores of patients who were underweight (36.77 ± 3.11) were lower than in patients who had a healthy weight (40.74 ± 5.54), were pre-obese (42.33 ± 6.88), or obese (39.19 ± 5.66). The mean PHS score of patients who had health insurance was 41.65 ± 5.33; in patients who did not have health insurance, this value was 39.13 ± 6.95. Average PHS scale scores of patients who received regular outpatient care (43.16 ± 4.96) were higher than in patients who did not receive regular outpatient care (38.33 ± 6.14). Average PHS scale scores for patients who did not use tobacco (42.01 ± 5.72) were higher than in patients who used tobacco (37.97 ± 5.95). PHS scale scores of patients who had chronic disease (41.77 ± 5.95) were higher than in those who did not have chronic disease (39.70 ± 6.06). PHS scale scores of patients who had tracheostomy surgery less than 45 days ago (42.01 ± 6.17) were higher than those whose surgery was more than 45 days ago (39.09 ± 5.57). 

The difference between 1) receiving regular outpatient care and 2) time since tracheostomy surgery and SCAS scores was statistically significant (P < .05). In addition, the difference between receiving regular outpatient care and SCAS scores was statistically significant (P < .05). The SCAS scores of patients who received regular outpatient care (85.65 ± 20.46) were higher than those in patients who did not receive regular outpatient care (51.59 ± 22.52). 

The difference between time since tracheostomy surgery and SCAS scores was statistically significant (P < .05).  SCAS scores of patients who had undergone tracheostomy surgery less than 45 days ago (73.73 ± 27.12) were higher than those in patients who whose surgeries had taken place more than 45 days ago (61.77 ± 26.56). 

The differences between 1) monthly income levels, 2) regular outpatient care, and 3) reason for tracheostomy and average score on the ADL scale were all statistically significant (P < .05). Patients with an income level less than 186 USD had the lowest ADL scale score (12.77 ± 4.37). ADL scale scores of patients who received regular outpatient care (16.00 ± 3.14) were higher than those in patients who did not (13.87 ± 2.57). ADL scale scores of patients whose tracheostomy was due to cancer (15.25 ± 2.63) were higher than patients who had tracheostomy due to shortness of breath (13.96 ± 3.94).  

Average scores for all 123 patients were 68.48 ± 27.42 (minimum, 0; maximum, 140) on the SCAS scale, 40.73 ± 6.07 (minimum, 15; maximum, 75) on the PHS scale, and 14.92 ± 3.05 (minimum, 0; maximum, 18) on the ADL scale. 

The relationship between PHS and SCAS scores was statistically significant and positive (r = 0.628; P = .001) (Table 3). PHS and SCAS increased together. The relationship between PHS and ADL scale scores was also statistically significant and positive (r = 0.238; P = .008), and the 2 increased together. Finally, the relationship between SCAS and ADL was statistically significant and positive (r = 0.461; P = .001), and the 2 increased together.

This descriptive and cross-sectional multisite study aimed to investigate relationships among self-care agency, health perception, and ADL of patients with a tracheostomy after hospital discharge. 

Various studies have investigated health perception, ADL, and demographic characteristics in different patient groups, but results and conclusions vary.^10,21,22 In a study carried out by Yilmaz et al¹⁰ that was conducted 3 days after surgery (general, orthopedic, urology, ophthalmology, plastic, cardiovascular, chest, and otorhinolaryngology surgeries as well as neurosurgery), there was a significant relationship between health perception and marital status. In the same study, the health perception scale averages of participants who were single were found to be higher than those of participants who were married. In a study conducted by Küçük and Yapar²¹ with patients with type 2 diabetes, a significant relationship was found between health perception and sex. In the same study, health perception scale averages of male participants were higher than female participants. Gür and Sunal²² examined the relationship between health perception and demographic characteristics of patients with coronary artery disease in a university hospital. They found a significant relationship between education, age, marital status, and BMI variables and health perception.

Some studies have reported a significant relationship between ADL and income status and cause of disease.^13,23,24 These results are similar to the results of the current study. These results could be caused by the fact that self-care agency, health perception, and ADL vary and depend on many factors.

The average SCAS score in the present study was 68.48 ± 27.42. In the study by Ermiş et al²⁵ to determine the self-care agency of patients with chronic heart failure, the mean score was 106.03 ± 16.51. In a study conducted by Firat and Öztunç to determine the self-care agency of individuals with total laryngectomy, the mean score was 76.5 ± 15.3.²⁶  In patients undergoing tracheostomy, the change in normal respiratory function and the difficult care process suggest that time is an important factor in adapting to tracheostomy. Self-care practices are behaviors that evolve over time and are learned through interaction.²⁷ Because this study included patients who continued to receive care at home for 1 to 3 months, it was anticipated that self-care practices would improve as these behaviors were learned, thus increasing self-care agency. In this process, nurses can play a key role in helping patients to gain self-care agency.

In our study, the average PHS score was 40.73 ± 6.07. Studies focusing primarily on the health perception of patients with tracheostomy were not found in the literature. However, in the study carried out by Yilmaz et al,¹⁰ the mean PHS score was 38.43 ± 7.70.¹⁰ Surgical intervention, whether large or small, planned or unplanned, affects the patient physiologically and psychologically. The formation of a stress response after surgery, decreased resistance to infection, deterioration of body image, and change of lifestyle may have caused a moderate health perception in patients with tracheostomy.

The average ADL scale score of patients in the present study was 14.92 ± 3.05 indicating that most patients were independent in activities of daily living. To the authors’ knowledge, there are no studies in the literature about ADL in patients with tracheostomy. However, in a study conducted by Mollaoğlu and Yanmış²⁴ to determine ADL in individuals with chronic diseases, the mean ADL score was 11.04 ± 4.99. In a study carried out by Turgay et al¹³ with patients aged 50 to 64 years who were receiving hemodialysis, the mean score was 17.28 ± 1.45. 

The relationships between the health perceptions of patients with tracheostomy and their self-care agency (r = 0.628; P < .001) and ADL (r = 0.238; P < .008) as well as the relationship between self-care agency and ADL was statistically significant and positive (r = 0.461; P < .001). Accordingly, as health perception increases in a positive way, self-care agency and independence in performing ADL also increase. The results of this study are in line with the findings of studies by Fex et al,²⁸ Pinar and Demirel,²⁹ and Jang and Shin.³⁰ In their study of 180 adults receiving home care, Fex et al²⁸ investigated the relationship between health perception and self-care agency and concluded that individuals with high health perception also had high self-care agency. In the study conducted by Pinar and Demirel²⁹ with 61 individuals living in nursing homes, the relationship between self-care agency and ADL in older persons was statistically significant and positive.²⁹ The study by Jang and Shin³⁰ of 817 adolescents found that individuals with high health perception also had high self-care agency. Individuals’ high perceptions of health can also mean that they have high expectations about themselves; therefore, it can positively affect the agency of self-care, enabling them to carry out ADL independently.

This study collected data from patients enrolled in 3 different centers in Turkey, and the results are specific to those groups. However, because tracheostomy care processes are difficult, time-consuming, and individualized, a larger sample size should be considered to study the effects of the tracheostomy care process and to generalize the study results. Future research requires larger samples to ensure that results are representative.

In this descriptive and cross-sectional multisite study, the authors aimed to investigate the relationships among self-care agency, health perception, and ADL in 123 patients with a tracheostomy after hospital discharge. It was determined that these patients had a moderate self-care agency and health perception and that they were able to perform ADL independently. These parameters are important for patients with a tracheostomy who continue self-care at home. Patients need to develop self-care agency and to perceive themselves as healthy so that they can adapt to changing living conditions and perform ADL after tracheostomy.

Although tracheostomy care is a difficult process for both patients and caregivers, legal regulations and health policies have been developed in many countries to support families providing care. In Turkey, health policies regarding the provision of care in the home by family members make the tracheostomy care processes easier than in other places. It should be kept in mind that the scores for self-care ability, health perception, and performance of ADL scales in patients with a tracheostomy may vary according to legal regulations, health policies, and sociocultural family structures in different societies.

Nurses spend a large amount of time with patients and their families, providing evaluations and assisting them in coping with difficult situations that can arise with the care of a tracheostomy at home. Patients with access to outpatient care had significantly higher SCAS, PHS, and ADL scores than patients who did not. Follow-up care may affect all dimensions of health and well-being. Self-care ability, health perception, and ability to perform ADL affect patients’ abilities to adhere to care practices. Understanding the relationships among those factors may help nurses optimize teaching and care to positively affect patient well-being following discharge. 

Dr. Altinbaş is an assistant professor, Adiyaman University, Faculty of Health Sciences, Surgical Nursing Department, Adiyaman, Turkey. Dr. Aslan is an assistant professor, Batman University, School of Health, Nursing Department, Batman, Turkey. Dr. Karaca is an associate professor, Adiyaman University, Faculty of Health Sciences, Nursing Department, Adiyaman, Turkey. Address all correspondence to: Yasemin Altinbaş, RN, PhD, Adiyaman University, Faculty of Health Science, Surgical Nursing Department, Adiyaman, Turkey 02040; tel: 0416 2233800-4620; fax: 0416 2233005; email: altinbasyasemin@gmail.com.