Caring for Patients With a Tracheostomy at Home: A Descriptive, Cross-sectional Study to Evaluate Health Care Practices and Caregiver Burden

In numerous countries, lay (family) caregivers are the primary providers of care for community-dwelling patients with a tracheostomy. Purpose: The purpose of this descriptive study was to determine health care practices and the burden on family caregivers for patients with a tracheostomy living at home. Methods: The research population included 50 caregivers (average age 55.60 ± 1.39 years; 25 [50%] female) who provided care to 50 patients (average age 63.50 ± 1.72 years; 35 [70%] male) who were discharged from the otorhinolaryngology clinic of an education and research hospital in Turkey. Patient and caregiver characteristic data and tracheostomy care practices were collected via face-to-face interviews between caregivers and researchers using paper-and-pencil questionnaires. The 18-item Zarit Caregiver Burden Interview also was completed; responses to statements are rated on a scale of 0–4, where 0 = never, 1 = rarely, 2 = sometimes, 3 = often, and 4 = almost always. Total scale scores range from 0 to 88; higher scores indicate greater burden. Data were transferred into a statistical analysis program. Results: The mean score for the Zarit Caregiver Burden Scale was 42.44 ± 1.93, inferring caregivers were moderately burdened. Caregiver burden scores were significantly higher among female caregivers, caregivers without health insurance, caregivers requiring help, caregivers with chronic illness, more daily care time (hours), and duration of total care (months). Patient burden scores were significantly higher among persons requiring provision of daily nebulization and oxygen therapy, external cannula cleaning, and daily patient care. Conclusion: This study illuminates the burdens faced by lay/family caregivers of patients with a tracheostomy and identifies for community health clinicians the challenges, care requirements at home, and burden of family caregivers that must be addressed.

Tracheostomy, considered to be the oldest known lifesaving method, is performed to open the airway.¹ Survival and improvement in the quality of life of patients with respiratory system illnesses resulted in a marked increase in the rates of tracheostomy creation.² According to descriptive studies,^3-6 the procedure increased the cost of health care services and many patients were discharged before tracheostomy closure and full recovery. Patient care required for the prevention of tracheostomy-related complications (eg, pneumothorax, apnea) is a complex and difficult process, particularly for critically ill patients and their relatives. The process includes providing an adequate and balanced diet, methods to facilitate communication, aspiration (suctioning of secretions), cannula cleaning, tracheostomy cuff management, stoma care, and dressing changes.

In numerous countries, family members continue to be the primary providers of long-term care.⁷ Therefore, care of the patient with a tracheostomy has become a crucial issue. A cross-sectional study⁸ in Egypt noted caregivers find it difficult to bear the burden of care for impaired elderly and persons who take on this role within the family usually need guidance, support, and specific skills to be able to provide the complex care necessary. A great deal of research^9-14 has been conducted on the evaluation of burden, specific needs, and problems of patients with various chronic diseases and their caregivers within the family. Ozer et al⁹ conducted a descriptive study among 223 family caregivers providing care to patients for at least 1 week in medical-surgical clinics. According to their study results, family caregivers need special skills in order to provide care. A descriptive study by Gülpak and Kocagöz¹⁰ (N = 235)  found caregivers need more support when caring for the patient receiving hemodialysis than when caring for the patient receiving usual care. Shieh et al¹² conducted a cross-sectional study that included 100 caregivers of postsurgical colorectal cancer patients in a teaching hospital in Taiwan and found family caregivers need social support to decrease the burden of care. Zaybak et al¹⁴ conducted a descriptive study to determine the burden of care among 100 caregivers for bedridden patients and found caregivers needed guidance to care for their patients. 

A limited number of studies^15-17 has been published on caregiver experiences with a tracheostomy, especially in the community setting. The descriptive study by McCormick et al¹⁵ of family experiences and outcomes after a tracheostomy underscored caregiver difficulties caring for patients with a tracheostomy after hospital discharge. A literature review by Kordic et al¹⁶ to understand the current knowledge of adults living with a tracheostomy and their caregivers reported negative experiences related to the care, support, and management of the patient with a tracheostomy. A descriptive study using Zarit Caregiver Burden Interview conducted by Binbay et al¹⁷ among 60 caregivers of patients with a laryngectomy found caregiver burden was high. According to these study results, more research is required to determine the requirements of individuals with long-term tracheostomies and the burden on their caregivers. 

The purpose of this descriptive study was to determine the health care practices and the burden on family members providing care for patients with a tracheostomy managed at home in Turkey.

Study design and sample. Data for this descriptive, cross-sectional design study were collected between July and October 2017. The research population comprised family caregivers of all patients with a tracheostomy who had been discharged and who would continue home care for at least 1 month after discharge from the otorhinolaryngology clinic of the Education and Research Hospital in Malatya, Turkey. Caregivers and patients were informed of the study and invited to participate by one of the researchers and informed consent was obtained from each caregiver. The inclusion criteria stipulated that the caregiver 1) provided care for a person with a tracheostomy at home for at least 1 month after hospital discharge, 2) the patient was at least 50 years old and the caregiver was at least 18 years old, 3) the caregiver and patient agreed to participate in the study, and 4) the caregiver had no problem communicating with the researchers. Caregivers for patients whose tracheostomy had closed, who were experiencing psychiatric distress, providing daily care to another patient with a different illness, and/or illiterate were excluded from the study.

Ethical approval. Institutional permission was obtained from Education and Research Hospital in Malatya where the study was conducted as well as from the Ethics Committee of the same hospital. In addition, written informed consent was obtained from the caregivers after they were informed about the purpose, method, and expected benefits and risks of the study.

Data collection tools. Paper-and-pencil data collection tools included 3 sociodemographic forms: a questionnaire describing caregiver characteristics, a questionnaire describing patient characteristics, and a questionnaire on patient care provided. Questionnaires were developed by the researchers in line with the related literature,^2,4,8,11,12 and expert opinions on the questions were obtained from a faculty member from the Department of Internal Diseases, Faculty of Nursing; a faculty member from the Department of Public Health, Faculty of Nursing; and a faculty member from the Department of Otorhinolaryngology. In addition, the 18-question Zarit Caregiver Burden Interview¹⁸ was completed.

Questionnaire on caregiver characteristics. This instrument included 39 questions regarding the characteristics of the caregivers (16 items) and patients (16 items) and patient care (7 items). This questionnaire included yes/no, open-ended, and multiple-choice questions such as the date of interview with the caregiver, age, marital status, level of income, working status, gender, education level, tracheostomy care education, health insurance, the presence of chronic illnesses, having children, relationship to the patient, daily care time, care duration in months, presence of other caregivers, and need to care for someone in addition to this patient. 

Questionnaire on patient characteristics. The questionnaire included yes/no, open-ended, and multiple-choice questions such as the date of interview with the patient, the date of tracheostomy operation, discharge date after tracheostomy, medical diagnosis, reason for tracheostomy, type of tracheostomy cannula (silver, silicone, or plastic), follow-up care, age, body mass index, income, budget allocated to care, gender, education level, health insurance, tobacco use, and the presence of chronic illnesses. Patient questionnaire was answered by the caregiver in the presence of the patient and checked from the patient chart. 

Questionnaire on patient care. This questionnaire included open-ended and multiple-choice questions on suctioning of secretions, nebulization, oxygen therapy, changing stoma dressing (peristomal), external and internal cannula cleaning, need and frequency of changing tracheostomy ties, and the duration of patient care.

Zarit Caregiver Burden Interview. The Zarit Caregiver Burden Interview, which includes statements reflecting how people feel when they provide care, was developed by Zarit et al¹⁸ in 1980. The interview, which is either completed by the researcher or the caregiver, consists of 18 items. Each item is rated on a scale of 0–4, where 0 = never, 1 = rarely, 2 = sometimes, 3 = often, and 4 = almost always.^7,18 Total scale scores range from 0 to 88; higher scores indicate a higher caregiver burden. According to this instrument, scores from 61 to 88 indicate severe burden, from 41 to 60 indicate moderate burden, from 21 to 40 indicate mild burden, and below 21 indicate little or no burden. The validity and reliability of the interview in Turkey were investigated by Inci and Erdem⁷ in 2006, and the Cronbach’s alpha coefficient of the 22item interview was found to be 0.95. In 2012, the validity and reliability for the scale were re-investigated by Ozer et al⁹ who calculated Cronbach’s alpha coefficient of the 18-item interview as 0.82. In the present study, Cronbach’s alpha coefficient of the interview was noted to be 0.90.

Data collection. Data were collected for the questionnaires via face-to-face interviews, which took approximately 20 minutes with caregivers and researchers. The results of the questionnaires were provided to the same researcher after they were completed and the caregivers were immediately assigned a number for anonymity. The researcher conducted the interviews at the patients’ homes. 

Data analysis. Data from the interview were collected using paper-and-pencil questionnaires and transferred for analysis to the SPSS version 18.0 (SPSS, Chicago, IL). Numbers, percentages, means, standard deviations, and distribution of minimum and maximum values were used to evaluate descriptive data. Kruskal Wallis and Mann Whitney U tests were utilized to compare variables. P <.05 indicated statistical significance.

Of the eligible patients in the research sample, 3 died, 4 were not able to communicate, and 2 had their tracheostomy cannula removed within the study period, leaving 50 patients and subsequently 50 caregivers (husband, wife, son, daughter, or daughter-in-law). 

Demographic characteristics of caregivers. The average age of the caregivers was 55.6 ± 1.39 years, 40 (80%) were married, 20 (40%) had income less than $185 US for per month (minimum wage is $400 in Turkey), 25 (50%) were female, 24 (48%) were primary school graduates, 28 (56%) had not received training on tracheostomy care, 19 (90.4%) received training from a doctor, and none of the caregivers were provided any professional care. Also, 43 (86%) had health insurance, and 8 (16%) had a chronic illness. Overall, 17 (34%) of the caregivers were spouses, 30 (60%) provided care for >13 months, and 25 (50%) provided care for <4 hours per day. Moreover, 29 (58%) were helped by another caregiver (see Table 1).

Demographic characteristics of patients. The average age of the 50 study patients who underwent tracheostomy was 63.50 ± 1.72 years. Among them, 39 (78%) used a silver cannula, 46 (92%) had regular hospital care, 26 (52%) had a high body mass index (>25.0), 19 (38%) had income in monthly <$185, 43 (86%) had a monthly care budget <$185, 35 (70%) were male, 16 (32%) were primary school graduates, 41 (82%) had health insurance, 7 (14%) used tobacco, and 26 (52%) also had a chronic illness (see Table 2). 

Daily care practices. Among caregivers, 14 (28%) performed daily suctioning of secretions; of these, 6 (12%) performed aspiration 1 to 5 times a day and 8 (16%) did so >6 times a day. Furthermore, 32 (64%) of the patients received daily nebulization and almost half (24, 48%) of the patients received nebulization 1 to 5 times a day. Thirty-four (34, 66%) received daily oxygen therapy and most (34, 68%) received oxygen therapy 1 to 5 times a day. Also among caregivers, 26 (52%) performed daily stoma dressing changes (peristomal care), most performed stoma dressing changes (peristomal care) 1 to 5 times a day, 31 (62%) cleaned the external cannula daily (26 [52%] did so 1 to 5 times a day), and 43 (86%) cleaned the internal cannula daily (all did s0 1 to 5 times a day) (see Table 3A and Table 3B).

The comparison of sociodemographic characteristics and caregiver burden is provided in Table 4A and Table 4B. A significant difference was noted between the mean caregiver burden score and caregiver gender (P = .043), health care insurance (P = .001), someone helping the caregiver (P = .027), presence of chronic illness in the caregiver (P = .003), daily care time (hours) (P = .005), and duration of total care (months) (P = .022). No significant relationship was noted between the mean caregiver burden score and age (P = .871), marital status (P = .554), education level (P = .956), working status (P = .095), income level (P = .0.750), relationship of caregiver to patient (P = .53), and whether the caregiver received training (P = .71) and from whom the training had been received (P = .069).

The difference between the mean caregiver burden score and provision of daily nebulization (P = .02)and oxygen therapy (P = .05) and external cannula cleaning was found to be significant (P = .05). The mean caregiver burden mean score increased with increased frequency of patient daily care. No significant difference was noted between the mean caregiver burden score and suctioning secretions (P = .012), stoma dressing change (P = .14) (peristomal care), and internal cannula cleaning (P = .91) (see Table 5).

This descriptive study involved 50 caregivers (husband, wife, son, daughter, or daughter-in-law) who provided care to patients with a tracheostomy for a minimum of 1 month at home. In the present study, the mean caregivers’ Zarit Caregiver Burden Interview score was 42.44 ± 1.93 (moderate burden). A descriptive study of family experiences and outcomes among 220 pediatric patients with a tracheostomy cared for at home showed that the importance of teaching, teamwork and support for families.¹⁵ Binbay et al¹⁷ performed a descriptive study of caregivers of 60 adult patients who underwent total laryngectomy; caregivers of these patients were reported to be highly burdened. It can be argued that the findings of the present study indicating moderate caregiver burden could be associated with the fact that more than half of the patients (58%) had been receiving care for more than 12 months, and the daily care time was <3 hours, lessening their perception of care burden. In addition to this, the study¹⁷ showed family caregivers need guidance, support, and skills to be able to provide tracheostomy care because none of the caregivers were provided with any professional care. In studies conducted in Turkey among various patient groups, mean caregiver burden score was reported to be high.^13,19 A descriptive study by Selcuk and Tara¹⁹ involving caregivers of 342 adult patients with chronic illnesses found a mean Zarit score of 61. A descriptive study by Sahin et al¹³ of caregivers of 165 cancer patients found a mean Zarit score of 32. In descriptive studies conducted in other countries that examined burden related to caring for patients with diseases such as stroke and chronic illness, caregiver burden was reported to be low: in Hu et al²⁰ in China, the mean Zarit score of caregivers of 117 stroke patients with depression and anxiety was 25; in Blonco et al²¹ in Spain, the mean Zarit score of family caregivers of 294 adult patients was 28. These lower burden scores may be due to better health care services provided in developed compared with developing countries.

When the factors affecting caregiver burden were examined in descriptive studies by Zaybak et al¹⁴ and Yesil et al,²² a significant relationship between caregiver gender and caregiver burden score was noted, which is in line with the findings of the present study (P <.05). However, some studies show no significant relationship between gender and caregiver burden.^13,19 Of note: in all of these studies, mean caregiver burden for women was higher than for men, perhaps a factor of women’s caregiver roles within society.

The literature supports that the presence of help providing care decreases caregiver burden.^14,19,23 Caregivers live the care process at different levels. Some individuals must carry out the caregiving process on their own, while some individuals receive support in this regard and provide relief of care burdens, underscoring the importance of the development and expansion of home care services in terms of support to caregivers. 

Having a chronic illness had a significant effect on the mean caregiver burden score (P <.05). Lifelong chronic illness weighs heavily on the caregiver because of the associated physical and psychological complications.²¹ In particular, the challenges of caring for a patient with a tracheostomy may increase caregiver burden because they have to manage their own chronic illness as well. 

The present study found mean caregiver burden score increased along with daily care time (hours), but mean caregiver burden score significantly decreased with the increase in the total duration of care (months) (P <.05). Patient care following tracheostomy requires information and skills regarding communication with the patient, tracheostomy aspiration, nebulization and oxygen therapy, and internal/external cannula cleaning.^2,3 It can be argued that the findings of the present study indicating the longer amount of time the caregiver allocated to daily care, particularly in the early months, could be associated with the increase in the burden level or that increasing levels of skill and knowledge over time reduces the feeling of burden. In the long-term care of elderly patients who underwent tracheostomy, the decreased need for suctioning of secretions and adaptation to the disease may result in decreased caregiver burden from the first months to the thirteenth month. When the daily care of the patients was examined, a significant relationship was found between mean caregiver burden score and provision of nebulization and oxygen therapy and external cannula cleaning (P <.05); the mean caregiver burden score was higher when the frequency of daily care increased. In elderly patients, nebulization clears secretions, which provides easier ventilation.^3,24 

No significant relationship was noted between the mean caregiver burden score and provision/frequency of suctioning, peristomal dressing change, and internal cannula cleaning (P >.05). The mean caregiver burden score was found to increase as the daily care of patients increased. In the present study, most of the elderly patients who underwent tracheostomy (84%) were receiving care for >4 months, which is considered to be the reason for less requiring suctioning (72%). However, because suctioning is a complex process that requires using sterile technique, it can be argued that burden for caregivers who perform this process >6 times a day (52.37 ± 16.55) was much higher than that of those who do not perform aspiration (40.55 ± 20.17). 

The data in this study were obtained from a small number of tracheostomy patients and their caregivers recruited from 1 hospital in southeastern Turkey, which limits the generalizability of the findings. Future research requires larger samples for ensuring more objective representation of caregivers and patients.

A descriptive study regarding the burden for caregivers of patients with a tracheostomy found the mean Zarit Caregiver Burden Interview score was 42.44 ± 1.93, indicating caregivers were moderately burdened. A significant difference was noted between the mean caregiver burden score and different variables (caregiver gender, health care insurance, help for the caregiver, caregiver chronic illness, time required to perform daily care, and need for daily nebulization, oxygen therapy, and external cannula cleaning). This study identifies important issues relevant to home care requirements and caregiver burden. Additional descriptive and experimental studies to further evaluate the findings of long-term and home care, including a larger patient population, are warranted.

Dr. Karaca and Dr. Altinbas are Assistant Professors, Adiyaman University, School of Nursing, Adiyaman, Turkey. Dr. Aslan is an Assistant Professor, Batman University, School of Nursing, Batman, Turkey. 

Please address correspondence to: Turkan Karaca, RN, PhD, Adiyaman University, School of Nursing, Adiyaman, Turkey; email: turkan_20051@hotmail.com.