Identifying the burdens for informal caregivers of tracheostomy-dependent people: a scoping review protocol

Abstract

Introduction

It is complicated and time-consuming to care for tracheostomised patients, and many informal caregivers are said to feel a variety of burdens, although we are unsure of the specifics of this burden. This scoping review aims to identify and examine the caregiver burden encountered by informal caregivers of patients with tracheostomy.

Methods and analysis

This scoping review will be carried out in accordance with Arksey and O’Malley and its extended framework, along with adherence to the guidelines provided by the Joanna Briggs Institute. Reporting will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review checklists. Searches will be conducted in PubMed, PsycINFO via EBSCO, Embase, Web of Science and CINAHL via EBSCO databases, as well as grey literature sources from the inception of the databases to July 2024. Additionally, reference lists of included studies will be manually reviewed for further sources. The quality of included studies will be assessed using the Crowe Critical Appraisal Tool, involving at least two reviewers in all steps of the review process. Data charting will be conducted in a narrative format, encompassing the study’s objectives and questions. This review will also aim to identify any existing research gaps.

Ethics and dissemination

This review protocol does not involve ethical disclosure. This scoping review will identify the burden for informal caregivers of tracheostomy-dependent people and share the results via professional organisations, conferences and scholarly publications.

Trial registration number

This protocol was preregistered with the Open Science Framework (CENTER FOR OPEN SCIENCE), with Registration DOI (https://doi.org/10.17605/OSF.IO/YCWXR).

Correspondence to Xiao Miao; [email protected]

STRENGTHS AND LIMITATIONS OF THIS STUDY

• This review will identify the informal caregiver burden of tracheostomy-dependent people based on its theoretical framework.

• We will conduct this scoping review using rigorous methodology in line with the framework proposed by Arksey and O’Malley, including the refinements and guidance provided by the Joanna Briggs Institute.

• The Crowe Critical Appraisal Tool will be used to assess the quality of individual studies.

• This protocol adheres to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Protocols.

• Two independent researchers will review each stage of the process.

Introduction

Tracheostomy, characterised by a tracheal incision followed by tube insertion,¹ is the earliest recognised life-saving technique for airway opening.² This vital intervention provides a direct airway for breathing, facilitates mechanical ventilation and is crucial for individuals facing various respiratory challenges and potentially life-threatening airway compromise. However, the scrupulous care that follows tube insertion into the anterior neck tissues and trachea is paramount.³ Informal caregivers, often unpaid family members and friends,⁴ are vital in the healthcare system and provide care for tracheostomised individuals with acute and chronic conditions.⁵ Their involvement includes managing the tracheostomy tube and providing psychological support throughout recovery.⁶

However, this demanding role imposes a significant burden. The intricate nature of tracheostomy care necessitates competence, dedicated time and financial resources, which pose considerable challenges for informal caregivers, who often lack formal medical training. Preventing tracheotomy-related complications (pneumothorax and apnoea) requires a high level of skill and knowledge.⁷ This care encompasses a multifaceted approach, including providing a safe diet, facilitating sufficient and efficient communication and managing the tracheostomy tube itself. Tube management involves tasks, such as removing aspirate secretions, cleaning the cannula, managing the tracheostomy cuff and conducting dressing changes.⁷ The specialised knowledge and skills required can be overwhelming for informal caregivers, leading to increased stress and anxiety.⁸ Moreover, caring for individuals undergoing tracheostomies is time-intensive and significantly burdens informal caregivers. Patients undergoing tracheostomies receive professional care in hospitals but depend on informal caregivers for support,⁹ especially postdischarge, if caregivers assume primary responsibility for their ongoing health.^{10 11} This responsibility of tracheostomy care often necessitates significant life adjustments for informal caregivers. Van Pelt et al reported that 13% of informal caregivers of tracheostomy-dependent patients stopped working to manage demanding caregiving responsibilities.¹² This loss of employment created financial strain and affected the caregivers’ sense of identity and social connections, contributing to social isolation and emotional stress.¹³ Aside from the multiple complex care needs and substantial time commitment, there are significant financial costs to caring for patients undergoing tracheostomies. Among families caring for children dependent on tracheostomy, 50% expressed challenges in providing food, 44% faced difficulties in covering housing expenses and 33% resorted to borrowing money from relatives or friends.¹⁴ This financial pressure contributes to the overall burden of caregiving and potentially limits their ability to provide optimal care.

The multifaceted burden on informal caregivers of patients undergoing tracheostomies extends beyond time and finances. Furthermore, in a concept analysis, Liu et al ¹⁵ proposed that the caregiver burden was multidimensional, including physical, emotional, psychological, family function, social and economic aspects. The dictionary defines burden¹⁶ as ‘a duty or responsibility that leads to worry, challenges or strenuous effort’ (p. 196). For instance, caring for a patient undergoing tracheostomy has been demonstrated to significantly impact caregivers’ sleep, emotional well-being, relationships and family life.¹⁷ A descriptive study by Binbay et al, using the Zarit Caregiver Burden Scale, examined 60 caregivers of patients undergoing tracheostomies and observed that they experienced a high level of overall burden.¹⁸ Unfortunately, caregivers’ burdens can negatively impact the well-being of the patients they care for.⁹ A cross-sectional study discovered a positive correlation between the Psychosocial Health Score (social, emotional and role functioning) of patients undergoing tracheostomies and the Health-Related Quality of Life (HRQoL) (physical, emotional, social and role functioning) scores of caregivers.¹⁹ Therefore, recognising and addressing these burdens is crucial to support caregivers and tracheostomy patients.

Currently, tracheostomies are increasingly common in hospitals, particularly among the older adult²⁰ and paediatric²¹ populations. These populations often require long-term tracheostomy support, both during hospitalisation and following discharge to home.²² To comprehensively summarise the burden experienced by informal caregivers of patients undergoing tracheostomies, we aimed to investigate the types, assessments and mitigation methods used to aggregate the informal caregiver burden of patients undergoing tracheostomies. Given the high heterogeneity of the aggregated informal caregiver burden, a scoping review is an effective way to achieve this goal.

Methods and designs

This protocol adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols (PRISMA-P)²³ checklist and has been formally registered via the Open Science Framework (CENTER FOR OPEN SCIENCE), with Registration DOI (https://doi.org/10.17605/OSF.IO/YCWXR).

Our team will employ both the Arksey and O’Malley methodology framework²⁴ and Joanna Briggs Institute (JBI) updated guidelines²⁵ to conduct this scoping review. The rigorous five-stage approach: Stage 1, identifying the research question; Stage 2, identifying relevant studies; Stage 3, study selection; Stage 4, charting the data; and Stage 5, collating, summarising and reporting the results²⁵ will be followed. In addition, we will report the full review following the PRISMA extension for Scoping Reviews (PRISMA-ScR) checklist.²⁶

Research objectives

This scoping review aims to outline the diverse array of burdens encountered by informal caregivers of tracheostomy-dependent patients, explicitly focusing on the extent and intensity of caregiving burdens. The preliminary goal is to provide a thorough understanding of the multifaceted challenges experienced by informal caregivers within this context. These challenges span various dimensions, including physical, psychological, emotional, financial and social strains.

Search strategy

In this scoping review, topic identification was scheduled for November 2023, followed by the commencement of database searches in December 2023. The review is projected to conclude by December 2024. The search strategy for this scoping review will align with recommendations outlined by the JBI framework²² and follow the Peer Review of Electronic Search Strategies guideline.²⁷ Additionally, the population, concept and context (PCC) mnemonic was used to identify the critical elements for the establishment of research questions, search strategy and eligibility criteria for this review. In line with the PCC approach, the three elements of interest were identified as follows: the population of interest as informal caregivers, the concept as caregiver burdens; in particular, caregiver burden is defined as the degree to which caregivers perceive that caregiving has negatively impacted multifaceted aspects encompassing the ‘emotional’, ‘social’, ‘financial’, ‘physical’ and ‘psychological’ domains,¹⁵ and the context within this scoping review focuses on the context of patients with tracheostomy irrespective of patients’ age and settings. Consequently, three main search concepts comprising tracheotomy, informal caregiver and caregiver burdens were retrieved.

The three-step search strategy advised by JBI was followed.²² In the first step, the keywords ‘tracheostomy’, ‘informal caregiver’ and ‘caregiver burden’ were expanded using spelling variants, synonyms, truncation and proximity operators. Additionally, Medical Subject Headings (Mesh) were searched for each concept. Finally, Boolean operators (AND, OR and NOT) were used to combine the search string (see table 1). Our team performed an initial search in PubMed and Embase to check the search strategy, while also identifying additional keywords, along with index terms in the titles and abstracts of relevant articles, to further refine the search strategy.

Table 1

Search terms regarding the three main concepts

PCC	Concepts	Keywords	Index terms
Population	Informal caregiver	‘Caregiver*’ OR ‘informal caregiver*’ OR ‘spouse’ OR ‘informal caregiving*’ OR ‘Spouse Caregiver*’ OR ‘Family Caregiver*’ OR ‘Loved one*’ OR ‘spousal care’ OR ‘family*’ OR ‘partner*’ OR ‘relative*’ OR ‘family carer*’ OR ‘informal carer*’ OR ‘informal care provider*’ OR ‘unpaid caregiver*’ OR ‘non-professional caregiver*’ OR ‘sibling*’ OR ‘carer*’ OR ‘first degree relative*’	PubMed : ‘Caregivers’ [Mesh] Embase: ‘caregiver’/exp
Concept	Caregiver burdens	‘Caregiver Burden*’ OR ‘Caregiving Burden*’ OR ‘care Burden*’ OR ‘physical’ OR ‘psychological burden*’ OR ‘mental burden*’ OR ‘emotional burden*’ OR ‘social burden*’ OR ‘financial burden*’ OR ‘physical burden*’ OR ‘practical burden*’ OR ‘psychological stress’ OR ‘mental stress’ OR ‘Anxiet*’ OR ‘depression’ OR ‘Post-Traumatic Stress Disorder’ OR ‘PTSD’ OR ‘Emotional Exhaustion’ OR ‘Fatigue’ OR ‘Financial Strain*’ OR ‘Financial Stress*’ OR ‘Caregiver Stress*’ OR ‘Caregiver burnout*’ OR ‘Care burnout*’ OR ‘Caregiving burnout*’	PubMed : ‘Caregivers‘ [Mesh] Embase: ‘caregiver‘/exp
Context	Tracheotomy	‘Tracheotomy’ OR ‘tracheostomy’ OR ‘tracheotomies’ OR ‘tracheostomies’ OR ‘Airway Management’ OR ‘Airway control’ OR ‘trachea stoma’ OR ‘tracheal’	PubMed: ‘Tracheotomy‘ [Mesh] OR ‘Tracheostomy’ [Mesh] Embase: 'tracheotomy'/exp OR 'tracheostomy'/exp OR 'trachea stoma'/exp

PCC, population, concept and context.

In the second step, all identified keywords and index terms will be used across all included electronic databases in PubMed, PsycINFO via EBSCO, Embase, Web of Science and CINAHL via EBSCO from inception until present without any restrictions. In the final step, grey literature will be meticulously investigated using resources such as the Health Services Delivery Research Programme by the National Institute for Health Research (http://www.netscc.ac.uk/hsdr/), the Nursing and Allied Health Resource Section (http://sites.google.com/site/nahrsnursingresources) and Google Scholar (https://scholar.google.com.br/). Additionally, the reference lists of all incorporated evidence sources will undergo scrutiny for potential supplementary studies. The search strategy related to the main concepts is shown in table 1, and a preliminary search conducted in Embase is demonstrated in table 2. A specialised librarian and a group of team members conducted the search strategy.

Table 2

Search results in Embase

No.	Query	Results
#10	#3 AND #6 AND #9	1293
#9	#7 OR #8	134 472
#8	‘tracheotomy’ OR ‘tracheostomy’ OR ‘tracheotomies’ OR ‘tracheostomies’ OR 'airway management' OR 'airway control' OR 'trachea stoma' OR 'tracheal'	134 472
#7	‘tracheotomy'/exp OR 'tracheostomy'/exp OR 'trachea stoma'/exp	51 046
#6	#4 OR #5	3 668 247
#5	‘caregiver burden*' OR 'caregiving burden*' OR 'care burden*' OR ‘physical' OR 'psychological burden*' OR 'mental burden*' OR 'emotional burden*' OR ’social burden*' OR 'financial burden*' OR 'physical burden*' OR 'practical burden*' OR 'psychological stress' OR 'mental stress' OR ‘anxiet*' OR ‘depression' OR 'post-traumatic stress disorder' OR ‘ptsd' OR 'emotional exhaustion' OR ‘fatigue' OR 'financial strain*' OR 'financial stress*' OR 'caregiver stress*' OR 'caregiver burnout*' OR 'care burnout*' OR 'caregiving burnout*'	3 668 247
#4	'caregiver burden'/exp	11 525
#3	#1 OR #2	4 358 033
#2	‘caregiver*' OR 'informal caregiver*' OR ‘spouse' OR 'informal caregiving*' OR ’spouse caregiver*' OR 'family caregiver*' OR 'loved one*' OR ’spousal care' OR ‘family*' OR ‘partner*' OR ‘relative*' OR 'family carer*' OR 'informal carer*' OR 'informal care provider*' OR 'unpaid caregiver*' OR 'non-professional caregiver*' OR ‘sibling*' OR ‘carer*' OR 'first degree relative*'	4 358 033
#1	'caregiver'/exp OR 'caregiver'	148 507

Study selection and eligibility criteria

All identified citations will be imported into EndNote X9 (Clarivate Analytics, Philadelphia, Pennsylvania, USA) and undergo a thorough duplicate removal procedure. Subsequently, we will use Covidence (Veritas Health Innovation) to screen the titles and abstracts, as well as the full texts. Two researchers will screen the citations independently according to the predefined criteria (see table 3). In the event of disagreements, a meeting will be held, and a third reviewer will be consulted in making a decision. The inclusion and exclusion criteria (see table 3) were set up according to the PCC framework.²⁷ Initially, we included adult tracheostomy patients (aged ≥18 years) and excluded children. We conducted a pilot screening of the retrieved studies, and two researchers read 25 articles separately. It was found that there was more literature on the burden of caregivers of children with a tracheotomy and less on adult patients. Accordingly, a meeting was convened to discuss the revision of the inclusion criteria and accommodate tracheostomy-dependent patients of any age. To optimise the retrieval of relevant literature, we intend to encompass all eligible publications from inception up to the present and include all types of studies, such as qualitative studies, quantitative studies, mixed method studies, reviews, conference papers and guidelines. Due to inadequate funding and limited translation resources, non-English publications will not be incorporated. Moreover, while it is not mandatory, we will apply the Crowe Critical Appraisal Tool (V.1.4)²⁸ to evaluate the quality of the included studies.

Table 3

Eligibility criteria

	Inclusion criteria	Exclusion criteria
Population	Informal caregivers of tracheostomy-dependent people (eg, the patient’s spouse, parents, friends and other unpaid family members)	Professional caregivers such as nurses, doctors and trained social workers
Concept	Caregiver burden that caregiving has negatively affected the carers' physical, psychological, emotional, social and financial status
Context	Patients with tracheostomy, irrespective of the context, including hospitals, home care, community care, recovery centre, rehabilitations and clinics
Types of sources	Qualitative studies, quantitative studies, mixed method studies, reviews, conference papers and guidelines
Date	All eligible publications from inception up to the present
Language	English	Non-English

Charting the data

Our team will summarise the findings that align with the objective and question of this scoping review, and a JBI extraction table template²⁷ will be adopted. Key information, such as author, publication year, country of origin, aims of the publication, population and sample size, methods and designs, settings (eg, hospital/community/home) and key findings will be extracted from the relevant studies (see table 4). A pilot data extraction of two studies has been performed to check the appropriateness of the data charting form. Data will be extracted by two independent reviewers using the predefined template. If any disagreements arise, a third reviewer will be consulted to reach a consensus through discussion. The data extraction will be an iterative process, and the charting table will be updated continually during the review stage.

Table 4

Data extraction template

Authors/year/country

Research aims

Designs

Sample size/population

Setting

Caregiver burden measured

Outcome measure instruments

Key findings/results

Collecting, summarising and reporting the results

The full review will be reported according to PRISMA-ScR checklists.²⁶ The evidence selection process will be presented using the PRISMA-ScR flow diagram.²⁹ This chart will comprehensively illustrate the entire study selection process, with each stage carefully designed and executed to ensure accuracy and integrity. It will include all our literature screening processes: initial search, selection of sources, elimination of duplicates, retrieval of complete texts, the inclusion of any additional material from a third search, extraction of data and, ultimately, the compilation of the literature.

The results presentation will be considered in relation to the scoping review’s objectives and questions in the form of a diagrammatic tabular and/or descriptive format. In addition, the data will be mapped by the different elements of the PCC inclusion criteria, and the results will be classified under the conceptual categories, for example, the concept ‘caregiver burden’ may be classified by physical, psychological, emotional and so on. The limitations of this review will be reported in the Discussion section.

Patient and public involvement

Patients and the public were not involved in the design, conduct, reporting or dissemination plans of this review protocol. We intend to disseminate the results through the social media channels of the corresponding author’s department.

Ethics and dissemination

Ethical approval is not applicable to this review protocol.

Conclusion

Our scoping review will aim to comprehensively review and summarise the care burden experienced by informal caregivers of patients with tracheostomy. It is envisaged that this will be essential for focusing on and improving the care burden in such populations.

YC is a recipient of a University College Dublin (UCD)-China Scholarship Scheme (Grant/Award No. 202008140086). We acknowledge University College Dublin and the Chinese Grants Council, which provided the China Scholarship Scheme (UCD) that supported this project.

Ethics statements

Patient consent for publication

Not applicable.

Footnote

X @[email protected]

Contributors HL, XM and YC contributed to the conceptualisation, review design and search strategy building. YC and SL were responsible for search strategy building. HL and XM contributed to editing and revising the manuscript. YC contributed to revising the manuscript and was the key in finalising the review. YC and HL contributed equally to this paper. XM is the guarantor of this review, taking primary responsibility for the review’s content and accuracy and will be the main contact for correspondence with the journal or any inquiries related to the review.

Funding This work was supported by ‘2023 Hospital Young Talent Fund Project’ grant number QN2307.

Competing interests None declared.

Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Provenance and peer review Not commissioned; externally peer reviewed.

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