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ORIGINAL ARTICLE
Year : 2020  |  Volume : 47  |  Issue : 3  |  Page : 148-152

Social impact of tracheostomy: Our experiences at a tertiary care teaching hospital of Eastern India


1 Department of Otorhinolaryngology, IMS and SUM Hospital, Siksha “O” Anusandhan University, Bhubaneswar, Odisha, India
2 Central Research Laboratory, IMS and SUM Hospital, Siksha “O” Anusandhan University, Bhubaneswar, Odisha, India

Date of Submission26-Jun-2020
Date of Acceptance27-Sep-2020
Date of Web Publication21-Jan-2021

Correspondence Address:
Prof. Santosh Kumar Swain
Department of Otorhinolaryngology, IMS and SUM Hospital, Kalinga Nagar, Bhubaneswar - 751 003, Odisha
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/jss.JSS_61_20

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  Abstract 


Background: Tracheostomy is a common surgical procedure performed in upper airway obstruction or in critically ill patients requiring prolonged ventilation. Although tracheostomy is a life-saving surgery, it is associated with higher rates of morbidity along with social stigma if stays for longer period. Although there are several studies for indications, complications, and different techniques for tracheostomy, but majority do not provide any insight into social impact of tracheostomy. Objective: The objective of this study is to assess the social impact of tracheostomy at a tertiary care teaching hospital. Materials and Methods: This is a retrospective observational study. The study was carried out from December 2017 to January 2020.There were 34 tracheostomy patients participated in this study. The observed complications in tracheostomy patients such as surgical/medical and social issues were documented. We conducted structured interviews with care givers of patients with tracheostomy. Results: Medical or surgical complications included excess mucus production (61.76'), infections at the stoma site (23.52'), blockage (17.64'), granulations around the stoma (11.76'), and maggots at the stoma (2.94'). The social impacts on tracheostomy patients included family reluctance to accept the patient with tracheostomy tube, unable to communicate and problems in social integration. Conclusion: Tracheostomy has several ranges of effects on quality of life of care givers and patients with tracheostomy. The management of social stigma associated with permanent tracheostomy is more challenging than any other complications due to tracheostomy procedure itself. It can be solved with proper counseling with family members those involved with patients.

Keywords: Family reluctance, quality of life, social impact, tracheostomy


How to cite this article:
Swain SK, Acharya S, Das S. Social impact of tracheostomy: Our experiences at a tertiary care teaching hospital of Eastern India. J Sci Soc 2020;47:148-52

How to cite this URL:
Swain SK, Acharya S, Das S. Social impact of tracheostomy: Our experiences at a tertiary care teaching hospital of Eastern India. J Sci Soc [serial online] 2020 [cited 2021 Mar 7];47:148-52. Available from: https://www.jscisociety.com/text.asp?2020/47/3/148/307606




  Introduction Top


Tracheostomy is one of the oldest surgical procedures where an opening is made in the anterior wall of the trachea and converting it into a stoma on the skin surface of the neck.[1] Tracheostomy may be temporary or permanent. In temporary tracheostomy, the tracheostomy tube stays for a few days to few weeks and finally remove once the resolution of the primary disease or when the airway obstruction is cleared. Once the tracheostomy tube is removed, stoma will be closed spontaneously using an air tight dressing or surgical closure. A permanent tracheostomy is usually stays on the patients for as long as he/she lives. This permanent tracheostomy is due to irreversible injury to the laryngeal architecture or bilateral recurrent laryngeal nerves which make the larynx inadequate for breathing through the laryngeal inlet. Indications for permanent tracheostomy include subglottic stenosis, total laryngectomy, bilateral recurrent laryngeal nerve paralysis or collapse, laryngotracheal resection, and staged laryngeal reconstruction.[2] Permanent tracheostomy is also done in case of severe obstructive sleep apnea syndrome where patient cannot tolerate continuous positive airway pressure and failed with other surgical procedure for sleep apnea syndrome.[3] Permanent tracheostomy affects vocal communication, eating, water-based activities, sleeping, and play of the person in daily life. The patient must be supervised in all the times by a care takers and respond to all needs as well as emergency conditions. Parents and care givers will often so much in mental and physical stress during care. In case of permanent tracheostomy, the constant presence of tube in situ, leads to undesirable effects to the neck tissue and to patients who wear. There is very little published data regarding social impact of tracheostomy whereas several data exist on changing scenario of different surgical techniques, indications, and complications of this surgery which does not offer any insights into the social impact of tracheostomy. In this study, we study the social impact of the permanent tracheostomy at a tertiary care teaching hospital of eastern India.


  Materials and Methods Top


This study is an observational retrospective study carried out at our center for 3 years. The purpose of this study was explained to all the participants including the care givers. After obtaining approval from the ethical committee of our institute, the study was carried out on 34 patients attending the outpatient department of otorhinolaryngology. The study was carried out from December 2017 to January 2020. All the patients of this study came to outpatient department for tracheostomy care were interviewed. There were 34 tracheostomy patients in this study with age range of 8 years to 72 years. Both genders were participated in this study where 66 males and 34 females. All of them underwent tracheostomy during the past 5 years. Out of 34 patients, 26 underwent tracheostomy at our institute whereas rest done in outside. All the patients those participated in this study had undergone direct laryngoscopy for assessing the laryngeal pathology. The inclusion criterion for this study was any patient with a tracheostomy in situ for more than 1 year. We targeted all the caregivers of tracheostomy patients those attached to the patients throughout the years and those are attending the outpatient department of tracheostomy for care and decannulation. Interview was done face to face with care givers. The complications of the tracheostomy which frequently gives suffering to the patients and care givers provide frequent visits to the doctors were documented such as tracheostomy block, excessive mucus production, infections at the stoma, granulations tissue at the stoma, hemorrhage, and ugly neck scar. Details of questionnaire related to the quality of life were completed by the caregiver, which focuses on physical symptoms of the patients, social impact including financial issues of medical visits, and quality of life. The social impact/issues or social setbacks related to the tracheostomy tube in the neck were documented such as adjustment to the social environment, interference with professional voice use or helpless to use proper voice use in family or with friends, acceptance to near and dear one and frequent cleaning the tube.


  Results Top


Out of 34 patients with permanent tracheostomy, 21 were male and 13 were female. The age ranges from 8 years to 72 years with mean age of 34.65 years. The indications for tracheostomy in this study patents were laryngotracheal stenosis, bilateral vocal fold palsy, postoperative total laryngectomy [Figure 1], and sleep apnea syndrome with morbid obesity [Table 1]. Most common etiology in this study was laryngotracheal stenosis (44.11') followed by postoperative laryngectomy patients (38.23'), bilateral vocal fold palsy (14.17'), and obstructive sleep apnea with morbid obesity (2.94') [Table 1]. At the times of examination, the patients have worn their tracheostomy tubes for more than 1 year to longest 12 years in this study. Apart from complications of tracheostomy itself, we identified several setbacks of the patients those underwent tracheostomy. Different setbacks due to tracheostomy were unable to speak with clear voice, family reluctance to accept patient with tracheostomy, problems of social integration and rehabilitation to professional voice use. Informing about permanent tracheostomy make a rude shock to the patient and patient relatives especially spouses in all the cases. The euphoria after relieving from the primary disease quickly disappears and replaced by despair and misery. Spouses and other relatives are terrified and their frequency of visits continues to reduce. The constant question was, when the tracheostomy tube will be removed? Here, all the care givers/relatives/spouses asked same questions, when the tracheostomy will be removed from the neck. This exposes their reluctance to take their wives/husbands to home with the tube.
Table 1: Indications for permanent tracheostomy in this study

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Figure 1: Postoperative laryngectomy patient with tracheostomy tube

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Medical issues associated with tracheostomy are excessive mucus production through tracheostomy tube (61.76'), infections at the stoma (23.52'), tube block (17.64'), formation of the granulations at the stoma site (11.76'), and maggots affecting the stoma site [Figure 2] in one case (2.94') [Table 2]. The negative social issues associated with tracheostomy tube in this study were reluctant to take care of the family members (64.70'), difficulty with professional use of voice (32.35'), problems in social integration (29.4') [Table 3]. In this study, 18 patients were unable to communicate to family members (52.94') whereas rest used speaking tube for voice production. In this study, 11 patients were professional voice uses and they lost their voice. One emotional issue associated with tracheostomy was when the tracheostomy tube will be removed in all cases (100'). The medical or surgical issues associated with tracheostomy tube were promptly treated when it arose. Excessive production of mucus often responds to antihistamines and corticosteroids. The stoma infections were treated with antibiotics as per culture and sensitivity report. Granulations at the stoma were scraped or curetted from time to time and sometimes chemicals such as silver nitrate were used which acted as chemical cautery. Tube blockage was cleared by regular suction cleaning and tube changing. Care givers were trained details of inner, outer, and obturator of the tracheostomy tubes [Figure 3]. None of the patients in this study presented with bleeding from stoma area except during scraping of curetting the granulations at the stoma region which never created problem.
Table 2: Medical complications associated with tracheostomy tube

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Table 3: Social issues associated with tracheostomy tube

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Figure 2: Maggots (yellow arrow mark) at the stoma of the tracheostomy

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Figure 3: Outer tube, inner tube, and obturator of the tracheostomy tube set

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  Discussion Top


Tracheostomy was introduced in the medicine as a technique of relieving upper airway obstruction as early as the second century AD by Galen.[4] Since then this surgical procedure has been used successfully to relieve upper respiratory tract block but in situations helps to protect lower respiratory tract, tracheobronchial toilet, and assist ventilation particularly in prolonged unconsciousness. It is often done preoperatively in major surgeries involving head and neck area where breathing could be compromised.[5] Although rare, tracheostomy can be done in case of sleep apnea syndrome where all other treatment option fails as in one case of this study. Tracheostomy is a life-saving surgical procedure and now also becoming an elective procedure done in the patients who cannot maintain patent upper airway without any artificial ventilation. Tracheostomy is one of the oldest surgical procedures performed and its application in medicine dates back to ancient Greece. Tracheostomy was primarily thought as an emergency surgery for sudden upper airway obstruction caused by infectious etiology such as epiglottitis or diphtheria.[6] Tracheostomy is considered a safe surgical procedure although it has its own minor and relatively rare major complications. The indications for tracheostomy include bypassing acute or chronic upper airway obstruction helps to patients requiring long-term ventilatory support, prevent aspiration by giving access for tracheobronchial toilet and prevent the formation of laryngotracheal stenosis in case of prolonged intubation and facilitation of weaning from ventilator by removing ventilatory dead space. In case of pediatric patient, the common indications for permanent tracheostomy include congenital and acquired airway stenosis, neurological conditions which need long-term ventilation or pulmonary toileting, bilateral vocal fold palsy, and infectious conditions compromising the upper airway.[7]

Tracheostomy may be short-term or temporary or permanent. In temporary tracheostomy, the tracheostomy tube stays in place for few days to few weeks and the tube is finally removed at the time of resolution of the primary disease or when the airway obstruction due to such condition is over. After removal of the tracheostomy tube, closure of the stoma is often done by use of the tight dressing of surgical closure. In case of permanent tracheostomy, the tube stays as long as patient lives. This may be due to associated irreversible damage to the architecture of the larynx leading to inadequate respiratory function. Patients with permanent tracheostomy in our region often face social setbacks such as problems of adjusting to the social environment, family (spouse/siblings/relatives) reluctance to accept, interfere with professional use of the voice and often social withdrawal from near and dear ones. Our experiences of these setbacks are illustrated in this study.

Over the years of the clinical practice, tracheostomy has been done by all types of surgeons. The patients those underwent permanent tracheostomy lives virtually with a tracheostomy tube in the neck all of his life. The attention of the patients and his or her surrounding people are often on the tube in the neck. Tracheostomy is usually associated with several complications such as tube block, excessive mucus secretion, stoma infections, polyp formation at the stoma, bleeding and laryngeal stenosis, and ugly neck scar.[8] In this study, the most common indication for permanent tracheostomy was laryngotracheal stenosis. After thyroid surgery, breathing difficulty and stridor often indicates bilateral recurrent laryngeal nerve paralysis. Other causes of upper airway obstructions after thyroid surgery include tracheomalacia, laryngeal edema, or tracheal collapse due to long-standing compression of the trachea by large goiter mass.[9] Decannulation of the tracheostomy tube is always the objective for surgeons and patient families but this is not possible in all the cases. The study shows that the decannulation rates vary approximately 35'–75'.[10]

Although tracheostomy is a life-saving surgery, it can cause emotional, financial, and psychological stress. A multidisciplinary team such as surgeon, physicians, nurse, respiratory therapy, occupational therapy, speech therapy, nutrition, and social worker may be required for streamlining the care of the patients with tracheostomy tube. They will train the patients and care givers. Patients with tracheostomy often have frequent appointments with physicians where trained staff or care givers often accompany with patient to travel safely.[11] Care givers for tracheostomy is an important part in the managing patients with tracheostomy tube. The stress, anxiety, strain, and burden are often associated with care givers. The socioeconomic status, resource available for care givers and stresses coming to the care givers are important factors to manage the tracheostomy patients. Prior to the discharge of the tracheostomy patients, the care givers should be trained for the routine care of the tracheostomy tube. Particularly, they must be trained to identify the problems such as requirement of the suctioning, breathing difficulty, and mucus plugging. The care givers must be prepared to change the tracheostomy tube easily and efficiently. They should be also trained for cardiopulmonary resuscitation.[12] At home, the certain things should be ready near to the patient such as separate set of tracheostomy tube, suction catheter, sterile saline, and portable suction machines, humidifies and oxygen saturation monitor.[12] All these must be in place and functioning properly. The primary aim of parents or care givers is to provide or help the patients to care tracheostomy in the home. Psychological preparation is a vital to them for providing optimum care. The stress may be intense when the patient is bedridden or fully dependent or sick requiring mechanical ventilation where keeping tracheostomy will add extra layer of the stress.[13] Social isolation, coping strategies, respiratory care, emotional, and physical outcomes after tracheostomy are important factors for creating anxiety among parents or care givers.[14] Care givers should be aware about fears such as fear of separation, disfigurement, loss of loved ones, pain, and loss of autonomy.?[1] The emotional and physical health of care givers can affect the well-being of the patients with tracheostomy.[1]

Informing the patient regarding permanent tracheostomy often poses a rude shock to them and to their spouses and parents. The euphoria of the discharge from the hospital quickly disappears and is replaced by despair and misery. Relatives and spouses get terrified and their frequency of visits continues to decline. They usually ask the question, when will be the tracheostomy tube will be removed? In this study, spouses/parents/relatives of all the participating patients (100') were asking same questions when the tube will be removed from neck. They show reluctance to take their patients home with tracheostomy tube. These types of rejections of the patients can be removed by rounds of conference with doctors and family. The concerned members related to the patients are educated with focus to benefits, complications, and explaining why the tracheostomy tube may not be removed or decannulated and how give best care to the tracheostomy tube. In this study, oldest patient was usually invited to share his experience and encourage to the other patients and their relatives. Teaching patients, spouses, relatives for changing the tracheostomy tube becomes easier after meeting/conference with doctors and patient and his or her relatives. The patient or care giver is sufficiently trained to master inner tube changing before discharge from the hospital.[15] Tracheostomy tube in the neck constitutes a social stigma and leads to inhabitation for social interaction. It is not only cosmetically unattractive but also a scarring in some communities. There are number of costumes devised for preventing this social embarrassment by concealing the tracheostomy tube. Sometimes, a high neck collar bib is designed for concealing the tracheostomy tube and the tapes attached to the tube. These are made up of several types of colors for matching any particular cloth worn by the patient. The tracheostomy tube can be concealed using different fashionable mufflers around the neck with help of very light nonairtight materials. The necklaces are also designed like jewelries for replacing the conventional tape of the tracheostomy tube. The management of social stigma related to tracheostomy is more difficult than other complications associated with surgical procedure, so the family members including spouses must be involved in it.


  Conclusion Top


Caring tracheostomy patients at home is often challenging for parents or care givers. Careful preparation and planning is the key behind successful transition for care in the home. Active participation for patients with tracheostomy tube will help to progression of the patient health. For many, tracheostomy is a means to an end which makes an anxiety and stress to the patients and care givers or parents. The problem due to permanent tracheostomy is really more than the complications due to surgery. The management of the voice and its rehabilitations are always challenging and scarce in our region. All efforts should be made for early tracheostomy in intensive care unit and also optimum effort must be made to prevent the bilateral recurrent laryngeal nerve paralysis during thyroidectomy surgery.

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Conflicts of interest

There are no conflicts of interest.



 
  References Top

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  [Figure 1], [Figure 2], [Figure 3]
 
 
    Tables

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