Research article
Quality of life improves for tracheostomy patients with return of voice: A mixed methods evaluation of the patient experience across the care continuum

https://doi.org/10.1016/j.iccn.2018.02.004Get rights and content

Abstract

Objectives

A tracheostomy tube can profoundly impact ability to communicate. The impact of this on patients’ self-esteem and quality of life in the care continuum from the intensive care unit to after decannulation has not been reported. Therefore, the aim was to investigate the patient-reported experience regarding change in communication function, communication-related self-esteem and quality of life.

Research design

A mixed methods approach was utilised. Quantitative data were obtained using validated measures of self-esteem related to communication-related quality of life and general health. Data were measured before return of voice, within 48 hours of voice return and six months after tracheostomy decannulation. Qualitative data were collected through structured interviews six months after tracheostomy.

Results

Seventeen participants completed the study. Four themes emerged from the interviews: It’s hard communicating without a voice; What is happening to me?; A storm of dark emotions and More than a response…it’s participating and recovering. Significant positive change occurred in six items of self-esteem related to communication from baseline to return of voice. Overall, positive changes in quality of life scores were observed.

Conclusions

Voice loss with tracheostomy significantly affected participants’ abilities to effectively communicate their care and comfort needs. Restoration of voice occurred in conjunction with patient-reported improved mood, outlook and sense of recovery.

Introduction

Patients receiving mechanical ventilation via a tracheostomy often experience a period of voicelessness due to tracheostomy cuff inflation and the diversion of expired breath from the larynx. The duration of voicelessness is variable and may be temporary or permanent (Happ et al., 2004). In a metasynthesis of 12 qualitative studies examining patients’ perceptions of voicelessness during mechanical ventilation (Carroll, 2004), only three studies specifically examined the communication experience. Patients perceived that they were misunderstood and disempowered during healthcare interactions. Such perceptions led to feelings of loss of control, unmet needs, dependency, dehumanisation and negative emotions.

More recent qualitative studies have shown that voicelessness also led to changes in communication dynamics (Carroll, 2007) that were not effectively addressed by alternative forms of communication (Foster, 2010).

The direct impact of loss of voice on quality of life (QOL) with critically ill tracheostomy patients is unknown. Hofhuis et al. (2008) reported general QOL in 451 patients admitted to the intensive care unit (ICU). A significant decrease in QOL domains included role limitation due to impaired emotional, physical and social functioning and in general and mental health issues. Phenomenological research into the experience of prolonged mechanical ventilation via a tracheostomy tube demonstrated that loss of effective communication, specifically absence of voice, was traumatic for patients due to an inability to relay intended messages to staff and that strategies such as family support and praising from health care professionals assisted recovery (Arslanian-Engoren and Scott, 2003). However, these interviews were conducted on average, two years after hospital discharge and therefore introduce possibility of recall bias and acceleration or dampening of emotions experienced at the time of mechanical ventilation.

Communication breakdown increased patient vulnerability for delayed responses to care/comfort needs (Hemsley et al., 2001). Therefore, speech has been identified as an important domain to measure in QOL in people who are mechanically ventilated (Pandian et al., 2015) and is an emerging area of ICU research. Although QOL has been examined in critically ill patients, the direct experience of voice change in patients with tracheostomy and associated QOL at recovery time points within ICU and beyond hospital discharge in a single cohort has not been previously reported. Furthermore, this issue has not been examined simultaneously with qualitative and quantitative approaches to provide a holistic understanding of patient outcomes. A mixed methods research approach at various time points including during ICU admission and six months after tracheostomy decannulation may provide new insights into this complex area of patient care. Data taken at varied points accommodate both immediate reporting and delayed recall in which experiences may be described in varied ways and therefore more richly understood.

The aim of this study was to investigate the patient-reported experience of tracheostomy tube placement over time in regard to change in communication function, self-esteem and health-related QOL from ICU to six months after tracheostomy decannulation and discharge home.

Section snippets

Methods

A mixed methods approach was used to address the aims of the study. A qualitative descriptive research design was utilised to address patient-reported impacts of impaired communication during and after ICU admission. Qualitative methods included structured participant interviews (six months after tracheostomy decannulation) and analysis of themes. Quantitative methods were used to address change in scores of patient-reported outcomes of self-esteem related to communication and general QOL.

Results

Seventeen patients were recruited to this study from a cohort of 30 patients previously enroled in a randomised controlled trial. Seven patients had died and six patients were not contactable. None of the surviving patients from the original study still had a tracheostomy tube and none were excluded from participation due to ongoing health issues. All recruited participants were able to confirm their recent ICU and hospital admission. VASES and EQ-5D data were complete for 94% (N = 16)

Discussion

This is the first study to report on patient experience, patient-reported self-esteem related to communication and QOL with change of voice, measured during active voice loss, day of return of voice, day of tracheostomy decannulation and six months after tracheostomy decannulation. Measuring patient outcomes at various time points, particularly long-term post ICU admission, has been identified as important for understanding ongoing impairments, costs and resources (Needham et al., 2012). Desai

Limitations

The results should be interpreted with caution as the development of the interview questions without use of ethnographic or Delphi techniques may have introduced the possibility of bias. The current study has raised some important issues regarding participants’ experiences of voicelessness following tracheostomy and these findings may be explored in more depth through face-to-face interviews and phenomenological descriptive interpretative design; however, telephone interviews are convenient for

Conclusion

This study confirms that loss of voice experienced with tracheostomy placement has a direct impact on patients’ ability to effectively communicate their emotions and needs in ICU. A multiple methods approach enabled the generation of varied patient perspectives, as it allowed time for patients to reflect on the experience of voicelessness and impact on their health care. Lack of effective communication results in incongruence between patient preferences and receipt of care, which can have

Declaration of interest/funding

Nil to declare.

Ethical statement

Ethical approval was given by the local health service Protocol X09-0380 & HREC/09/RPAH/643 and registered prospectively on www.ANZCTR.org.au, protocol number ACTRN12610000075088.

References (39)

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