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 Table of Contents  
REVIEW ARTICLE
Year : 2017  |  Volume : 1  |  Issue : 1  |  Page : 24-42

The experience of adult patients who have tracheostomy tubes in situ: A systematic review


Nursing Critical Care, School of Nursing, University of Adelaide, Adelaide, Australia

Date of Web Publication23-Jun-2017

Correspondence Address:
Mohammed Al Humaid
Nursing Critical Care, King Faisal Specialist Hospital-Riyadh, Saudi Arabia

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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/sccj.sccj_2_17

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  Abstract 

Background: There is a wide range of conditions requiring a patient to have tracheostomy tube insertion. The use of tracheostomy tubes in hospitals has increased among patients with both stable and critical conditions. Respiratory illness may make it necessary for patients to have an alternative breathing system (apart from the mouth or nose) whether as a temporary or permanent procedure. Patients have different experiences of tracheostomy tube insertion. Aims: This study aims to perform a systematic review of qualitative research into the experiences of patients treated with a tracheostomy tube. Objective: The objective of this study is to systematically appraise qualitative evidence on the experience of adult patients having a tracheostomy tube in situ. The report seeks to answer the following question: What are the experiences faced by adult patients with a tracheostomy tube in situ? Inclusion Criteria: Types of Participants: This review included any research that used qualitative methods to investigate the experiences of adult patients with tracheostomy tube insertion. Phenomenon of Interest: The phenomenon of interest was the experience of patients with a tracheostomy tube in situ either as a temporary or permanent procedure, either in hospital or in the community. Types of Studies: This review deliberated on studies that concentrated on qualitative data. The review included all study designs; for instance, phenomenology, action research, grounded theory, feminist research, and ethnography. Search Strategy: The review included all relevant studies published in Arabic and English obtained from the following databases: CINAHL, Cochrane Library, EMBASE, MEDLINE (PubMed), and Scopus and reference lists. There was no limitation on year of publication, and reference list items were searched along with keywords in the heading, abstract, and topic descriptors. Methodological Quality: The methodological quality of each study was assessed by applying the Joanna Briggs Institute's Qualitative Assessment and Review Instrument. Data Collection: The study included adult patients treated with a tracheostomy tube. The research literature was searched using the standard methodology of qualitative research. The two reviewers then applied inclusion and exclusion criteria to the studies and evaluated the findings that met the inclusion criteria on the same subject. Data Synthesis: Synthesis of all data enabled a statement to be created that explains the experiences of adult patients with a tracheostomy tube in situ in the hospital or community. The data were then characterized according to the quality of findings and the similarity of meaning. Results: Four studies met the study selection criteria and were included in the systematic review that determined the experience of patients with a tracheostomy tube in situ. There were 18 findings extracted from the included studies. These were synthesized and then grouped into seven categories in relation to similarity of meaning. The seven categories remaining were then synthesized in a meta-synthesis that produced four outcomes linked to the experiences of participants having a tracheostomy tube in situ: (i) Communication is fundamental. (ii) The experience has both physical and psychological impacts. (iii) There are long-term consequences. (iv) Staff and patients work together to achieve positive outcomes. Conclusions: In the studies appraised by the reviewers, the importance of understanding the experiences of adult patients with tracheostomy tubes in situ was clarified. Patients have a right to experience correct practices that may help them to adapt to a new lifestyle with a tracheostomy. Implications for Practice: Patients should be given support physically, psychosocially, and emotionally after tracheostomy tube insertion. In addition, nurses' awareness about patients' educational needs regarding tracheostomy care, before discharge from hospital, needs to be increased. Implications for Further Research: Further research is required to identify the ways to reduce patients' negative experiences after having a tracheostomy tube in situ.

Keywords: Community, experiences, hospital, patient, qualitative, tracheostomy


How to cite this article:
Al Humaid M, Wiechula R. The experience of adult patients who have tracheostomy tubes in situ: A systematic review. Saudi Crit Care J 2017;1:24-42

How to cite this URL:
Al Humaid M, Wiechula R. The experience of adult patients who have tracheostomy tubes in situ: A systematic review. Saudi Crit Care J [serial online] 2017 [cited 2018 May 24];1:24-42. Available from: http://www.sccj-sa.org/text.asp?2017/1/1/24/208922


  Introduction Top


Each patient has a different range of circumstances leading to a tracheostomy tube insertion. Some have a tube inserted as a result of a critical medical situation and admission to the acute setting while others are in a stable condition and are admitted to the regular unit or are living in their home. Critically ill patients, particularly those in the intensive care unit, usually have trouble breathing and require medical intervention to resolve this problem. The difficulty in breathing and subsequent need for mechanical ventilation may arise due to sedation, facial fractures, subcutaneous emphysema, or an entire body weakness.[1] Prolonged breathing complications for critically ill patients warrant the insertion of a tracheostomy tube as an aid to the respiratory system.[2],[3] In other situations, patients might be in a stable condition but require tracheostomy tube insertion to protect their airway or to keep the airway clear of secretions – this group of patients might be admitted to the regular floor in the hospital or the rehabilitation center, or may be living in their home or community center. Insertion of a tracheostomy tube is a procedure used widely in health-care settings.

A tracheostomy tube is an essential procedure for patients suffering from complications of acute or chronic respiratory failure.[2] In addition, reports in the literature have indicated that the tracheostomy procedure is increasingly used in patients whose conditions are deteriorating or are stable but require protection of their airway for some reason.[4],[5],[6] This procedure helps to reduce the strain on the vocal cords, thereby acting as an efficient “breathing system.” Further, it supports the ability of health professionals to provide, or wean patients from, mechanical ventilation, clears secretions from the chest, reduces the threat of aspiration in the patient with poor cough reflex, and bypasses upper and lower airway obstructions.[7]

The tracheostomy tube introduces the patient to a new lifestyle experience as it requires them to learn new coping strategies, irrespective of whether the tube is permanent, or temporary. The tracheostomy tube presents new challenges to the patient, especially in communication through speech.[8] Apart from these challenges, there are other impacts arising from having a tracheostomy tube in situ, as will be explored later. Professional health staff and the broader community, therefore, need to understand more about the patient's experience of having a tracheostomy tube in situ to help enhance the patient's quality of life.[9],[10]


  Background Top


A tracheostomy tube is an artificial airway that is widely used in Australian hospitals,[11] and its insertion is an essential procedure in some types of diseases. There are many advantages of having a tracheostomy tube inserted, such as improved patient quality of life, reduced number of patient-days in hospital, and decreased health-care costs.[12] A tracheostomy tube can be used for short or long periods when the patient suffers respiratory failure.[13] It can be used as a short-term procedure in cases of inadequate coughing, severe pain or weakness, chemical or inhalation burns, and an inability to handle respiratory secretions.[5],[7],[9] Other indications for considering this treatment as a short-term option include upper airway edema, infections or burns, or as prophylaxis.[14] There are other indications for tracheostomy tube insertion, such as failure to dislodge a foreign body from the upper airway.[15],[16] Trauma to the neck (severe injuries) and facial fractures leading to the potential for upper airway obstruction could also result in the need for this particular approach of tracheostomy insertion.[16],[17] Conditions such as a pathological glottic, congenital anomaly, or prolonged endotracheal intubation can be regarded as major indications leading to the consideration of long-term tracheostomy tube insertion.[5],[14] Other indications for considering this treatment as a long-term option includes patients' undergoing major surgery to or around the upper airway such as laryngectomy; patients unable to maintain an airway independently due to reduced function in cranial nerves or prolonged unconsciousness; or patients suffering severe sleep apnea nonamenable to other therapies.[5],[14] In all these indications, a tracheostomy tube is considered an appropriate method to allow the patient to breathe efficiently. However, each patient has different circumstances leading to tracheostomy tube insertion; therefore, every patient who has a tracheostomy tube has a different experience.[18] Some will require a prolonged stay in hospital and others will be discharged from hospitals with a tracheostomy.

It is essential to analyze the tracheostomy tube procedure; in particular, what is a tracheostomy tube and what is the purpose of inserting it? Consideration of these aspects will allow for the identification of the range of experiences that may be faced by patients in the hospital and community who have been treated with such tracheostomy tubes.

A tracheostomy tube is inserted following a surgical procedure that involves creating a hole in the front of the neck.[19],[20] The tracheostomy tube is inserted into the trachea or windpipe, and the entire surgical process is carried out with a view to allowing the patient to breathe in an efficient way.[19] In contrast, an endotracheal tube (ETT) and mask, an alternative for short-term support of the airway, do not require a surgical procedure. However, an ETT does require some degree of sedation while the patient is on a mechanical ventilator. In contrast, patients with a tracheostomy tube in situ do not require sedation while on a mechanical ventilator. Further, ETT patients need to be in the acute care unit, whereas tracheostomy tube patients can be managed in regular wards or outside the hospital, such as in the rehabilitation center or family home. Humans need to breathe to stay alive, and this is achieved by inhaling air either through their noses or their mouths.[5],[19] However, when a person suffers trauma or a catastrophic neurologic insult and as a result finds it difficult to breathe, creation of an alternative airway by insertion of tracheostomy tubes can be considered.[21]

Tracheostomy patients find it difficult to transition from their normal state to life, in which they have to use the tracheostomy tube for breathing. Patients' transitions from one condition to the next should be considered by health-care staff.[22] Tracheostomy tube insertion in patients involves a transition that has a significant effect on the life of the individual. Critically ill patients can experience extreme changes to their lives. The transition comprises three aspects: the health–illness transition (from health to critical illness); developmental transition, where the illness affects the patient and their family; and situational transition, which involves the patient's role changing due to the disease. Therefore, critically ill patients may experience different transitions that may at times overwhelm them if not handled appropriately.[23] Thus, understanding a patient's experience of having a tracheostomy tube is a cornerstone for nurses, so they can provide holistic care and prepare patients physically and psychosocially for life in the community before they are discharged from hospital.[24] An analysis of cases of tracheostomy in Australia indicates that more than 7000 patients each year have a tracheostomy tube inserted for the purpose of addressing breathing-related issues.[11]

Various research has been published on patients' experiences on mechanical ventilators with ETT, tracheostomy, or a mask in situ. Many studies have been conducted by nurses regarding the procedure of weaning from a mechanical ventilator and discharge arrangements from hospital to the home.[25] Further, some studies have discussed the experience of children, or of family members providing care for a child on a mechanical ventilator and living in the home.[25] However, there has been no systematic review discussing the experience of adult patients with a tracheostomy tube in situ. Therefore, this study explores the experience of adult patients who have a tracheostomy tube in place. The study excludes research pertaining to ETT because the majority of ETT use is of a short-term (temporary) nature, and patients are sedated. This group of patients would not be able to express their experience of having ETT. In addition, the study excludes patients on the face or nose mask ventilation, regardless of whether the mask is used for a short or long period. In this study, the focus is on patients who have a tracheostomy tube in situ, for either the short or long term, in the hospital or community, and who can describe their experiences. The results will help patients to better recognize the problems that they will encounter as a result of tracheostomy tube insertion. It will identify problems faced by patients in both hospitals and community. Conducting this research will increase patients', families' and professional health staff's awareness of the issues that might be faced by patients after they have a tracheostomy tube inserted.

The rationale for the systematic review emanates from the increasing number of cases of adult patients with tracheostomy tubes in situ. Tracheotomized patients have many experiences, and it is necessary to determine the prevalent issues so that appropriate recommendations can be made to improve patients' adaptations to this medical intervention.


  Systematic Review Purpose or Question Top


What are the experiences faced by adult patients with a tracheostomy tube in situ?

Inclusion criteria

The review included only studies relating to the experiences of adult patients aged more than 18 years and who have undergone the process of having a tracheostomy tube inserted. The reviewed studies involved face-to-face interviews to obtain first-hand information from the participants. Nonadults who had tracheostomy tubes in situ were excluded from the review, as they did not meet the criteria: nonadults may be less proficient than adults at communicating their feelings about having the treatment. Family and care providers' experiences of caring for patients who have tracheostomy tube insertions were also excluded from the study.

Type of participants

The studies used in this review all reported adult patients' experiences with tracheostomy tubes in situ, either temporary or permanent. The participants were patients of both genders in hospitals and the community. The studies did not take into account aspects such as cultural factors. The review focused on patients' experiences with tracheostomy tubes in situ in the hospital and community.

Phenomenon of interest

The phenomenon of interest in this review was adult patient participants' experiences of tracheostomy tube insertion either as a temporary or permanent procedure.

Context

The review context was the experience of adult patients having a tracheostomy tube in situ whether in the hospital or the community. The review captured the positive, negative, and neutral experiences of the patients and explored their general experiences.

Types of studies

This review included any study that used qualitative methods to investigate the experiences of patients with tracheostomy tubes in situ in the hospital and community. In general, the qualitative studies used phenomenology, grounded theory, ethnography, focus groups, action research, and thematic analysis. The search was restricted to published papers in the English or Arabic languages. The interviews in the studies were semi-structured, thereby allowing participants to describe their individual experiences and feelings toward tracheostomy tube insertion into their breathing system.

Search criteria

Searches were conducted using a range of research and medical databases and were aimed at collecting primary studies on the experience of adult patients with a tracheostomy in situ. Searching was limited to publications covering the topic of patients' experiences of having a tracheostomy tube in situ. Searches were conducted in English and Arabic (the primary reviewer's native language). As the databases presented a vast amount of information on the study topic, an appropriate search strategy that allowed all available information to be gathered was applied that involved an electronic search of the different databases as well as hand searching of the published and gray literature. The review topic was considered when choosing the database. The electronic databases employed were CINAHL, Cochrane Library, EMBASE, MEDLINE (PubMed), and Scopus [Appendix 1] [Additional file 1]. The CINAHL database was used first as it includes many comprehensive nursing research studies on the topic of interest. MEDLINE was used through PubMed and using MeSh terminology to find different terms related to the subject. The search also encompassed sources that included nursing literature, allied health, which has documents that are easy to access. Keywords were searched in the heading, abstract, and topic descriptors. The reference lists of published studies were used as the basis for additional searches that uncovered more articles related to the subject.

The terms used in the search were:

  1. Phenomenon “tracheostomy,” “experience,” “qualitative,” “patients,” “community or hospital,” “phenomenology,” “lived experience” and “adult” Population Adult patients who have had a tracheostomy.
  2. Methods The methods explored in this research were phenomenology, hermeneutic phenomenology, ethnography, qualitative method, grounded theory, qualitative inquiry, focus group, content analysis, and action research.


It was essential to use different ways of expanding search phrases, for example, using symbols or truncation and synonyms. The research strategy documented all steps: keywords and Boolean operators were utilized to minimize the biases of the reviewers.[26] Further, some articles were not included in electronic databases, so hand searching was very helpful to detect articles relevant to the topic. Another method was to search gray literature for articles produced by governments or institutions, but that were not published.


  Method of the Review Top


Assessment of methodological quality and critical appraisal

Methodological quality of the studies was assessed by applying the Joanna Briggs Institute's Qualitative Assessment and Review Instrument (JBI-QARI). The critical appraisal aims at providing the best evidence both in practice and in research. In this case, the collected data must be appraised to ensure that the research findings are the most appropriate. Crowe and Sheppard [26] state that a critical appraisal helps in assessing a study's methodology before it is included in a review. The study follows a qualitative form as the interviews have already been conducted in the primary research. A huge volume of data on patients' experiences with a tracheostomy must be analyzed for the study to be comprehensive. To this end, two reviewers using the Joanna Briggs Institute Critical Appraisal Checklist for Interpretive and Critical Research [Appendix 2] [Additional file 2] examined all the included papers. A third reviewer's assistance was available in cases of disagreement between the two reviewers.


  Data Extraction Top


A data extraction form was used to ensure that only data relevant to the study was extracted, and to minimize errors and prevent omission of important items, thereby increasing the reliability of the information from the individual studies and the transcriptions. The JBI-QARI Data Extraction Form for Interpretive and Critical Research [Appendix 3] [Additional file 3] is a standardized data extraction tool and was used here. Extracted information included the study description, method, methodology, intervention, context, and participant data.


  Data Summary and Synthesis Top


The JBI-QARI was used to summarize and synthesize the data and to create a robust explanation of the experiences faced by tracheostomized adult patients both in hospital and in the community. The data were then classified according to the quality of findings and similarities to facilitate efficient data synthesis, hence, more rigorous research. The data were then meta-synthesized and organized into a narrative form for presentation.


  Results Top


Search results

The combined search strategy located 275 documents [Figure 1]. The titles and abstracts of the papers were examined, and 203 were excluded because they clearly did not represent qualitative research. The remaining 72 studies had their titles and abstract screened thoroughly a second time, and 52 of these were excluded for similar reasons. The final 20 articles were appraised to determine the experience of patients with a tracheostomy tube in situ. Of these, four articles met the inclusion criteria and were included in the systematic review of the results [Figure 1].
Figure 1: Flow chart of the search and study selection process

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Description of studies

In the search strategy, there was no restriction on year of publication for the articles retained, which comprised four main articles published in the previous decade. These articles were used to examine the experiences of adult patients with a tracheostomy. A detailed portrayal of the descriptions of involved studies is delivered in Appendix 4.[Additional file 4]

The first study was conducted in a large teaching hospital in the United Kingdom. The study was a purposive study, in which three participants (two males and one female) narrated their experiences after tracheostomy tube insertion. Semi-structured, face-to-face interviews were used, and the participants' responses were audio-taped and later transcribed for analysis. The participants were interviewed only once, and the duration of the interviews was 48–63 min. The data were analyzed using “Giorgi”s five concrete steps of the human scientific' phenomenological analysis. Subsequently, the findings were used to express patients' experiences of having a tracheostomy tube in situ.[24]

The second study was a pilot study that involved five male and three female participants and semi-structured interviews. The age range of participants was 19–76 years. The study excluded participants who were unable to speak English or who were using additional devices for communication. The study was conducted in a large teaching hospital in southern England. The participants discussed their experiences of tube insertion. A thematic analysis of the experiences of adult patients with a tracheostomy tube in situ was used.[5]

The third study used a phenomenological approach. Unstructured interviews were used and the participants' responses recorded. The audio-taped interviews were then transcribed for improved analysis. The study was significant in its development of the thematic analysis conducted and demonstrated throughout the review.[18]

The fourth study was a descriptive study involving 11 tracheostomized adults: eight males and three females. The participants were able to speak and understand Norwegian only. They ranged in age from 47 to 72 years with the duration of their tracheostomy ranging from 3 to 27 days and time since discharge from hospital, 3–18 months. Data collected through semi-structured interviews was digitally recorded and transcribed verbatim. The study was important as it allowed for a better understanding of the adult patients' experiences through the application of transition theory.[10]

Methodological quality

The quality of the selected studies varied as did the quantity and value of the data. All were restricted in their methodological approach.[5],[10],[18],[24] An influence of the researcher on the research was apparent in only two papers.[5],[10] Conversely, the overall value of the included studies according to the JBI critical appraisal criteria was assessed as high: all scored 8–9 on the 10 criteria evaluated. [Table 1] presents the outcomes of the quality appraisal.
Table 1: Quality appraisal of studies

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Findings of the review

Eighteen findings were extracted from the included studies. The outcomes were first evaluated for reliability then distributed to three ranks of credibility based on the strength of the supporting illustration. These ranks were:

  • Credible: the findings were complemented by illustration and had a clear meaning
  • Unequivocal: the findings were supplemented by illustration and were reasonably discussed
  • Unsupported: the findings were not supported by the data.


Thirteen findings were determined to be credible, and five were unequivocal; there were no unsupported findings [Appendix 5] [Additional file 5]. [Table 2] shows the extracted findings, categories, and synthesized findings from the evaluation; the synthesized outcomes are discussed in detail below using direct quotations to illustrate the meanings of the various categories. Eighteen findings were included, and these were grouped into seven categories in relation to similarities of meaning as follows:
Table 2: Extracted findings, categories and synthesised findings

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  1. Communication is central to the social being
  2. Communication is a struggle
  3. Physical discomfort
  4. Psychological discomfort
  5. Long-term consequences
  6. Trust/confidence and support
  7. Coping.


The seven remaining categories were then synthesized in a meta-synthesis that produced four synthesized instruction outcomes to be applied as the source for evidence-based practice and recommendations. The four synthesized outcomes linked to the opinions and experiences of participants having a tracheostomy tube in situ were:

  1. Communication is fundamental
  2. The experience has both physical and psychological impacts
  3. There are long-term consequences
  4. Staff and patients work together to achieve positive outcomes.


Synthesized finding 1: Communication is fundamental

All studies revealed that a tracheostomy tube has a huge impact on patients' communication. Feelings of disappointment due to their inability to speak, the loss of their voice, and their inability to be understood by health-care professionals or family led to participants feeling frustrated and bored. The synthesized findings introduced two diverse categories: “Communication is central to the social being” and “Communication is a struggle.” These categories are portrayed separately below.

Communication is central to the social being

This category reflected that communication is fundamental for all people. Lack of communication by participants affected their ability to be a social being and to interact with staff and their families.

A normal voice is very important for people; when they realize their voice has become abnormal, they begin to feel frustrated. For example, one participant commented that her voice was “funny,” as her children realized and reported to her: “My voice is different, definitely that's something my kids have picked up on every time they see me they say I've got a funny voice, cause I gather there's only a minimum amount of air getting past … past your trachy. Yeah I just can't wait to get it out definitely” (p. 1121).[18]

Another participant commented that communication was essential for social interaction with other people. Speaking allows patients to interact with others (health-care professionals and family) and be recognized by them. One study described that participants' inability to communicate was annoying and frustrating for them: “the first thing that I do remember about the tracheostomy was towards the end … a great frustration about being unable to talk” (p. 39).[24]

Communication is a struggle

The majority of participants were struggling with communication due to their inability to talk or be understood. Participants described their feelings as “awful” when they could open and close their mouth and know what they were saying, but nobody heard or understood them, which caused them to become upset.

Some participants felt that physical discomfort or sensation was controllable and easy to cope with, and was of minor importance compared with communication issues. This was demonstrated by one interview: Interviewer, “Ok so you had a change yesterday what was that like?'; Duncan, 'oh not too badly … it doesn't hurt or anything'; Interviewer, 'Doesn't hurt?'; Duncan, 'No … oh well they when they put it down you they … well first of all you don't have your voice, so, you can't talk and so it's hard to get some of the nurses to understand you” (p. 1119).[18]

All participants in all studies reported physical hindrance in their ability to communicate.[10] For example, muscle weakness and tremors affected their ability to use communication aids such as writing on a board or a picture board.[10] Participants described their experiences with lack of communication as tiresome and laborious. This is illustrated in a quote from one study: “they tried with the board. And then, then you have to try again because you didn't get it right. It was a bit tiresome” (p. 2299).[10]

Synthesized finding 2: The experience has both physical and psychological impacts

The experience of participants breathing through a tracheostomy tube was often unanticipated due to the severity of respiratory disease. Hence, participants who had a tracheostomy tube reported deep physical sensations and psychological issues. The synthesized finding presented two different categories: physical discomfort and psychological discomfort. These categories are introduced individually below.

Physical discomfort

This category included how participants described physical discomfort relating to the tracheostomy tube. Some participants explained the physical sensations as being quite painful and annoying for several days after nurses changed the tracheostomy tube or dressed the stoma. Other studies reported that participants described it as painful when they tried to cough or move from one side to the other.[27] For example, one participant said, “You can feel it all the way around because when you cough, you're retching at the same time … and then it is painful” (p. 40).[24]

The majority of participants commented on the tracheostomy tube as an obstacle to normal life. The tracheostomy tube caused difficulty with swallowing; therefore, it restricted participants' normal movements, eating, and drinking. This was described in one study as, “I couldn't eat properly and I found afterward when I started swallowing again … you could feel where the wound was and you feel as though your throat was bruised” (p. 504).

Psychological discomfort

This category includes psychological experiences of participants having a tracheostomy tube in situ and how tracheostomy impacted on their feelings.

The review found that the majority of participants had experienced psychological discomfort, feeling “horrible,” “disgusting,” and powerless because of the tracheostomy tube. Participants therefore commented on the need for mental preparation before the procedure: “I think the best way is once you've had it done once and you know you've gotta have it done a second time is just to grin and bear it, really attack it mentally otherwise it'd just bloody drive you crazy I think” (p. 1119).[18]

These participants mentioned being unable to interact with people after attempting many times, leading to them feeling powerless and hopeless, and giving up on communication. This was expressed in the following quotation: “I had given up you see. Given up. Because I couldn't. But, well then I had to accept it you know. I was forced to accept it” (p. 2298).[10]

Other participants expressed their experience of psychological discomfort as a loss of control due to emotional challenges. The participants described various emotional challenges such as stress and panic, which all led to loss of control: “Just then, I struggled a bit. It was so unreal to not be able to make a sound. It turned into a bit of a big deal. Yes, that's what it was” (p. 2299).[10]

Tracheostomy tube was a new experience for participants; hence, a lack of explanation about the tracheostomy tube process and how long this would last led to fear of the unknown. This was identified by participants: “it wasn't really a problem at that time but I think I'm a bit concerned about how long this was going to go on for” (p. 40).[24]

Synthesized finding 3: Long-term consequences

Research participants articulated a variety of fears and uncertainties about their tracheostomy tube and its long-term consequences. These fears were related to body image perceptions; consequently, participants' life satisfaction was significantly reduced. Some participants expressed their emotions when they lost normal body function for a short time, which had longer-term impacts than simple physical discomfort. This is demonstrated in the following quote: “I can't bear the thought of having a sore mouth again … I get frightened that it will because that's the worst thing, not being able to breathe and not being able to swallow (p. 39).”[24] Other participants noted that the tracheostomy tube has an effect on their perceptions even after decannulation.

Synthesized finding 4: Staff and patients work together to achieve positive outcomes

The review revealed a significant influence of health-care professionals (nurses and doctors) and families on tracheostomy tube research participants. Explaining the tracheostomy procedure to patients and showing them pictures of the tube in situ might help them to cope with their body image. In addition, if health-care professionals demonstrate their abilities and the method of changing the tracheostomy tube, the level of patient trust might increase. The synthesized finding introduced two different categories: Trust/confidence and support; and Coping. These categories are presented individually below.

Trust/confidence and support

This category refers to health-care professionals and how they show patients that they are well trained and knowledgeable about caring for tracheostomy tubes. Providing information to patients before changing the tracheostomy tube or doing suctioning could help patients to feel more confident. As a result, participants explained how they were confident during their procedure: “No I wasn't apprehensive about that … they explained the procedure about the guide tube and I was quite confident with them like you know they said they had done plenty of these (laughs) (p. 1120).”[18]

Conversely, other participants expressed having less confidence and trust due to lack of information.[5] Participants had negative feelings, for instance, annoyance and discomfort, because of the shortage of knowledge about the tracheostomy. Participants explained how they needed more information about the procedure: “They come and have a few words with you and then go on their way and not have time to sit and explain … It would have been nice to have had more” (p. 505).[5]

Coping

Participants expressed how they felt they were living with a strange body image. Their self-esteem was low, and they needed much assurance to cope with the tracheostomy tubes. Hence, providing enough information to patients is essential to make them feel safe and able to cope with a new situation, and will help them accept their condition easily, as stated by one participant: “I think that most people would accept that it's there for what it's there for, to keep you alive (p. 505).”[5]

The majority of participants found it difficult to communicate with staff or relatives, as a result, they simply remained calm and waited for the tracheostomy tube to be removed.[10] Other participants found different ways to cope with their new circumstances. For example, some described coping in the short-term using lip reading and gesticulations. After some time of having a tracheostomy tube in situ, participants were able to gain some control: “as time passed, the participants gained control over their body, thereby enabling them to use aids, such as pointing at picture boards and writing with pen and paper” (p. 2300).[10]

In general, participants stated they had positive experiences with health-care professionals due to good-quality communication. Several participants noted that eye contact, physical contact, and calmness were very important factors in promoting feelings of security and safety.[10] For example, one quotation illuminates how a participant felt about the positive experience of having eye contact and physical contact from health-care professionals: “When the anxiety comes, they were there straight away. They tried to calm you down, held your hand, and spoke to you. Communicated even though I didn't have a voice. And eye contact, that was very important for me then” (p. 2300).[10]


  Discussion Top


This review has described the experiences of adult patients with tracheostomy tubes in situ. The findings from different studies were discussed to identify experiences of such patients. The review involved four primary studies that presented the synthesis that forms the basis of the consideration in the light of the relevant experiences for the patients. One study included in the discussion described the experiences of ventilated patients without distinguishing between those with and without tracheostomies. The current review describes the experiences of adult patients having tracheostomy tube in situ in the hospital and community using a meta-synthesis analysis approach. This resulted in four synthesized outcomes linked to the opinions and experiences of participants having a tracheostomy tube in situ. Other findings in the studies were not included in the systematic review findings because the outcomes were not related to the experiences of patients having a tracheostomy tube. In addition, other findings did not support participants' experiences having tracheostomy tube in situ; hence, these findings were excluded from this review.

The outcomes of this study reveal the quality of the experiences of adult patients having tracheostomy tube in situ. The four synthesized outcomes include that communication is fundamental; the experience has both physical and psychological impacts; there are long-term consequences, and staff and patients work together to achieve positive outcomes. These outcomes summarize the experiences of the participants in the studies.

Communication is fundamental

Communication is fundamental. All human beings need to communicate but patients with tracheostomy, because of their altered mechanism of communication, have a particularly critical focus on communication. Communication is a great struggle for them and the physical and mental effort required often results in considerable frustration. A tracheostomy tube has effects on the patient as a social being, and hence, study participants struggled due to their inability to communicate with people.

Communication is central to the social being

Communication is necessary for patients as social beings and is the basis for all human interaction. However, participants found it difficult to develop and sustain interactions with other people due to tracheostomy tube insertion. A lack of communication may be a significant challenge to patients.[5],[10],[18],[24] Participants described how the tracheostomy tube hindered their interactions with staff and family members, which could be isolating. Therefore, participants became more frustrated and annoyed due to the tracheostomy tube.[10],[24] Other studies indicated that speaking allows participants to be unambiguous and recognized by other people for who they are. Hence, taking away, the ability to speak means taking something from their identity.[24]

According to Foster,[24] social interaction was a vital part in communication as stated by the study participants: “The meaning of verbal communication as being a fundamental aspect of social interaction appears to be clear” (p. 39).[24] Hence, lack of communication might have an effect on the social identity of patients. Effective communication not only provides what patients need; it is essential for a social being to help others understand what they need and to build good relationships between patients and their families, which may assist health-care professionals to apply a high quality of patient care.

Communication is a struggle

Participants reported that communication was very important in relation to physical sensation.[18] The tracheostomy tube produced difficulties in communication, and it was a major source of continued struggle for participants, whether in hospital or in the community and for their relatives. Another participant indicated that communication difficulties with health-care professionals made them struggle to obtain their needs such as toileting, pain medication, and suctioning. Moreover, family and friends may find it hard to understand patients which in turn frustrates the patient. Therefore, participants may have a negative experience due to ineffective communication.

In addition, not all health-care professionals and participants' relatives or friends were able to communicate effectively with participants who had a tracheostomy tube; therefore, many issues arose due to a lack of understanding of participants' needs.[13],[19],[25] Indeed, the majority of studies identified communication difficulties as being an important source of isolation for the social being and a continuing struggle for patients with a tracheostomy tube in situ.

The experience has both physical and psychological impacts

Tracheostomy tubes had many physical and psychological effects on participants. The experience of participants having a tracheostomy tube was a combination of physical and psychological effects and was more complex than they anticipated.[5],[14]

Physical

Many studies identified that tracheostomy inhibited the ordinary lives of participants. The insertion of the tracheostomy tube was reported as very painful, from the initial procedure to insert the tube to follow-up activities.[18],[24],[27] Activities such as the maintenance of the airway, management of the tubes, and clearance of sputum caused participants substantial pain. In addition to Foster,[24] who described pain related to tracheal suctioning and wound dressing, the pain related to tracheostomy procedures was described by Arroyo-Novoa et al.[27]

Participants noted that their mobility level was very restricted by the tracheostomy tube.[15] Physical limitations included both constrained movement and limited speech. As a result, participants began to feel powerless because of the sensation of being incapable of communicating their pain.[10],[15],[18] Such feelings were also identified in other studies.[16],[17],[27],[28] Some studies described that most of their participants with tracheostomy tubes found it difficult to deal with routine activities such as eating, swallowing and conversation, which led to numerous physical sensations.[5],[18],[24] These studies determined that participants with tracheostomy tubes preferred to regain their normality, which was difficult at times, especially for participants who require a tube for the rest of their lives.

Psychosocial effects

Various studies have reported that participants with tracheostomy tubes in situ experience many psychosocial discomforts. Therefore, for participants given constant respiratory care through a tracheostomy tube, there was a greater requirement for psychosocial support from health-care professionals, family members, and friends. The tubes are restrictive, denying patients a chance to socialize freely with other people. Lack of interaction and low socialization developed into more pronounced psychosocial discomfort such as anxiety and hopelessness among participants.[10],[18] The participants felt isolated from their friends and family members, who viewed them as disabled people. This in turn led to withdrawal from social forums so that participants ending up living lonely lives.[14],[28]

Studies have highlighted patients' feelings arising from having a tracheostomy tube in situ. As participants experienced difficulties with interaction, breathing and fatigue, they became increasingly fearful and uncomfortable about what might happen to them next.[6],[8],[24] Participants were always anxious, wondering how other people perceive them, and about the treatment, they would receive from people who note their condition.[5] As a result, participants were isolated from social interaction and felt powerless and lonely. Although these studies described participants' feelings while in hospital, many patients with tracheostomy tubes are living outside hospitals, and they need to be understood and supported psychologically and socially.

There are long-term consequences

Few studies mentioned participants' experiences of the long-term consequences of tracheostomy tube insertion. According to Foster, “loss of normal body function albeit temporary has an ongoing impact longer than when the physical discomfort has ended” (p. 39).[24] A tracheostomy tube has a major impact on participants in the long-term, even after decannulation. Although participants were decannulated, their well-being and body image perceptions still deteriorated in contrast with noncannulated participants.[15] Due to slow recovery from respiratory diseases, stoma healing and low ongoing body perception, patients' body cathexis, and life satisfaction may be reduced.[15],[19],[24] This may also explain why a tracheostomy tube has such a huge impact psychosocially, in comparison with physical discomfort. The long-term consequences of tracheostomy tubes could be indicated by participants' perceptions of inequality in relation to their way of breathing, as well as difficulties in communication with other people, particularly outside the hospital setting.[15],[19],[24]

The surrounding assistance was a significant determinant of emotional repossession from traumatic and stressful conditions, particularly after a tracheostomy tube was removed.[24] Even after physical rehabilitation was completed, participants needed psychosocial support through the progression of a tracheostomy tube, particularly in the area of body image perception and well-being.[15] This review identified few findings related to long-term consequences from tracheostomy, and additional study in this area is suggested.

Staff and patients work together to achieve positive outcomes

Various studies indicated that health-care professionals (nurses and doctors) and families have a significant effect on tracheostomy tube research participants. Providing sufficient information related to tracheostomy procedures to participants might help them to cope with their body image. In addition, having health-care professionals present their capabilities and demonstrate how the tracheostomy tube is exchanged may improve the level of patient trust.

Trust/confidence and support

Providing appropriate information to patients who have a tracheostomy tube in situ would increase their satisfaction with health-care professionals. To build trust and confidence, health-care professionals need to provide enough explanation to patients before and after procedures such as suctioning and changing the tube.[7],[18] Some participants praised staff for their performance, which indicated that they had a high level of trust and confidence in the staff.[10] Another study suggested that health-care professionals (nurses) need to display a high level of interpersonal skills, for instance, empathy, touch, and trust. Showing patients how staff are very competent in applying care in tracheostomy procedures can help them feel safe and secure.[28]

Conversely, patients' confidence in hospital staff came up among experiences they faced with tracheostomy tubes in situ. In most instances, participants did not have trust or confidence in hospital staff (nurses) due to a lack of accurate information relating to the technique or timing of decannulation, which caused participants to feel more frustrated and uncomfortable.[5] Some health-care professionals do not give patients sufficient information before the insertion of the tracheostomy tube, partially due to overwhelming workloads or insufficient training.[16],[15],[28] However, it was important for participants that they receive relevant and accurate information related to the tracheostomy tube and the progression of their disease, which could assist in achieving positive outcomes with respect to their physical and psychosocial condition, and increase their trust and confidence in health-care professionals.[10],[19]

Coping

Patients might cope better with tracheostomy tubes using various methods to communicate with health-care professionals and families and having enough information and understanding about their condition. Various studies illustrated that participants used several kinds of techniques for coping with hopelessness and the powerlessness of being unable to communicate due to their tracheostomy tube. For example, some participants used humor in challenging circumstances, mouthed words, used lip reading and gesticulation, or wrote with pen and paper.[10],[15],[29] Such methods could help participants to cope and be satisfied with tracheostomy tube insertion. Another study describes patients' ways of coping with tracheostomy using distraction methods such as listening to music or watching television, which takes their mind off their condition.[15] Using a range of techniques for interacting with health-care professionals could help participants to cope with their situation and improve their relationship with staff.

Several participants mentioned that eye and physical contact, as well as adequate information from health-care professionals, were very significant ways of increasing their feelings of security and safety while in hospital.[5],[10],[15],[30] In addition, making goals, planning, and preparing for the future was essential for participants as it helped them to cope with the tracheostomy tube. Therefore, health-care professionals play an important role through the care and support; they provide to patients, which enables them to better cope with their new circumstance by finding different ways of communicating with people and dealing with their physical and psychosocial issues. This will help patients to accept their situation with a sense of security and with positive outcomes as reported by participants in the reviewed studies.[10],[15],[17]

Recommendations

More and more patients are receiving tracheostomy tubes in hospital. However, after tracheostomy, tube insertion has been conducted; there is little supportive follow-up to ensure improved quality of life for patients. This review presents an avenue through which recommendations stemming from studies of the experiences of patients with tracheostomy tubes in situ can be made. These recommendations aim to improve the quality of life, as well as enable nurses to offer better clinical care for patients. The recommendations include:

  1. Training of nurses to ensure they equip patients with the necessary information to help them cope with the tracheostomy tubes
  2. Training of professionals to counsel and offer support to patients
  3. Community awareness of the need to accept these patients and accommodate them in their lifestyles
  4. Creation of forums and interaction platforms for patients with tracheostomy tubes in situ to meet and interact with each other.



  Conclusions Top


The essence of this review was the experience of adult patients with tracheostomy in situ. The experiences of participants in different studies showed that a tracheostomy tube has a huge impact on patient condition. Patients should be given support physically, psychosocially, and emotionally after tracheostomy tube insertion. In addition, nurses' awareness about patients' educational needs before discharge from hospital, regarding tracheostomy care and adapting to the tracheostomy tube in the community, need to be increased. Moreover, the review illuminated that health-care professionals and patients work together to achieve positive outcomes as the main experience of the participants in their journey of having a tracheostomy tube in their system. Programs that could help health professionals, patients, and families to overcome psychological issues and to adapt to the new lifestyle with tracheostomy could be developed.

Implications for future research

Currently, little literature is available on the subject of the review, and thus, this study serves to increase the wealth of knowledge on the topic. Further research is required, however, to identify ways to reduce patients' negative experiences after having a tracheostomy tube in situ. This study might guide other researchers interested in the topic. For example, little is known of patients' experiences having a tracheostomy tube in the community. Future research could use a similar approach as was used here, to examine the experiences of people living outside the hospital setting (i.e., in the community) with tracheostomy tubes in situ, which might help to prepare patients before discharge from hospital with a tracheostomy tube.

Acknowledgments

I appreciate and thank my course coordinator Dr. Rick Wiechula. He was very caring, helpful, and supportive in his guidance throughout this course.

.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

 
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