Caregiving experiences of informal caregivers of adult stroke patients during the COVID-19 pandemic: a qualitative systematic review protocol

Abstract

Objective: 

The objective of this review is to identify, appraise, and synthesize the best available qualitative evidence on the caregiving experiences of informal caregivers of adult stroke patients during the COVID-19 pandemic.

Introduction: 

The functional and health outcomes of stroke patients are directly impacted by the mental and physical well-being of the patient’s informal caregiver, which have been negatively affected by COVID-19 due to a lack of caregiver education and competency in caring for stroke patients. Therefore, improvement of the informal caregiver experience will preserve the stroke survivor–caregiver relationship and the care goals of stroke patients.

Inclusion criteria: 

This review will consider qualitative studies focusing on the experiences of informal caregivers of adult stroke patients during COVID-19. Only informal caregivers will be included, defined as individuals of any age, gender, or culture who provide care, typically unpaid, to someone with whom they have a personal relationship (ie, family or friend). Studies conducted in inpatient settings, rehabilitation settings, community care settings, or home care settings will be considered.

Methods: 

The databases to be searched include MEDLINE, CINAHL, Embase, Web of Science, and PsycINFO. Sources of unpublished studies and gray literature will include ProQuest Dissertations and Theses, MedNar, and the American Heart Association. Studies published from 2019 to the present will be considered and data synthesis will be conducted using the meta-aggregation approach. Confidence in the findings will be assessed using the ConQual approach.

Systematic review registration number: 

PROSPERO CRD42022326666

Introduction

Stroke is defined as focal cerebral damage that causes neurological deficits as a result of the sudden occlusion or rupture of a cerebral artery.¹ Strokes that are caused by a vascular occlusion are classified as acute ischemic strokes, while those caused by vascular rupture are classified as hemorrhagic strokes.¹ Some examples of the functional deficits sustained after stroke include hemiplegia, hemisensory loss, and aphasia.^1,2 The treatment of acute stroke includes the stabilization of systemic factors, as well as the identification and management of underlying stroke causes.¹

According to the American Heart Association, stroke is the fifth-leading cause of death in the United States (US), and is a leading cause of serious long-term disability.² The health care cost related to stroke in the US totals approximately US$49.8 billion annually.² Globally, the prevalence of stroke is 101.5 million people; this includes 77.2 million ischemic strokes and 29.1 million hemorrhagic strokes.² Strokes were responsible for 6.6 million deaths worldwide in 2019.² The highest rates of stroke mortality are recorded in Eastern Europe, Central and Southeast Asia, and Oceania.² These statistics are staggering, clearly indicating that stroke is an area where evidenced-based care should be prioritized and that the care of stroke patients should be optimized.

Due to the deficits sustained following acute stroke, many stroke survivors require rehabilitation services and continued care related to activities of daily living.² Caregiving is defined as the provision of care services by individuals to those in need of regular ongoing assistance with everyday tasks.³ Caregivers are defined as the individuals who provide this ongoing assistance with everyday tasks,³ and can be defined as either formal or informal.⁴ Formal caregivers typically have formal health care or caregiving training through educational or certification programs and are typically hired through a service (eg, health care system, home health agency) and paid for their services.⁴ The titles of formal caregivers may include, but are not limited to, home care worker, home health worker, home health nurse, personal care assistant, and personal care attendant. Informal caregivers are defined as caregivers who provide care, typically unpaid, to someone with whom they have a personal relationship (ie, family or friend).⁵ This review will focus on informal, unpaid caregivers. It has been demonstrated that stroke patients’ functional and health outcomes are directly affected by the mental and physical well-being of the patient’s caregiver.⁶ Additionally, the failure to adequately educate the informal caregivers of stroke patients regarding stroke etiology and prognosis, secondary preventative measures, and informal support can prevent the patient from reaching maximum rehabilitative potential.⁷

Caregiver burden increases the probability that patients will require institutionalized care, negatively affecting the health and functioning of patients.^8,9 Furthermore, research is reporting worsening overall caregiver burden due to COVID-19, secondary to the distress, anxiety, and fear directly related to the outbreak.^8–10 One study of family caregivers of persons with chronic health conditions reported that impacts related to COVID-19 include increased financial burden, decreased social participation, and increased anxiety and depression.¹⁰ COVID-19 has increased the challenges in meeting stroke patients’ health care needs and fulfilling their rehabilitation services, including the education and competence of informal patient caregivers.^8,9 Due to strict social distancing protocols and imposed lockdowns, health care services and rehabilitation services were suspended in some countries.⁸ The suspension of services led to an increased number of patients returning home, with caregivers providing total care and rehabilitation services within the home.⁸ Some countries, such as the US, enacted strict visitation policies in the hospital and rehabilitation environment, inhibiting the participation of families and caregivers.^9,10 These visitor restrictions postponed caregiver training to near discharge or on the day of discharge, raising concerns that the long-term health outcomes of stroke patients may be negatively affected due to the minimization of caregiver training by health care professionals.^9,10

Many developed countries, such as the US, Canada, and European countries, are facing aging populations and the rising frequency of chronic health conditions.^11–13 Another stressor affecting the sustainability of health care includes the ever-changing improvements in medical technologies, drugs, and health care standards.¹¹ Internationally, total health expenditure related to pharmaceutical products has risen in all European countries,¹⁴ therefore, improving health care efficiency is becoming a primary focus of health care.¹¹ Patient-centered outcomes are being highlighted as ways to measure the value of health care efficiency through care aimed at meeting the patient’s priorities.¹¹ Further, the down-trending adjustments in insurance reimbursement rates are motivating a focused shift to value-based care and improved efficiency within the stroke patient population.¹¹ This work has intensified efforts to improve the patient experience, promoting health care in which patients are willing to pay for medical care in order to achieve a social, clinical, or financial outcome.¹¹ One of the high-value areas of health care is the experience of the patient’s caregiver, and this review will focus on the experiences of informal caregivers, as these have been negatively affected by COVID-19.

A preliminary search revealed 2 qualitative studies on the topic.^6,8 The 2 studies explored the experiences of informal stroke caregivers during the COVID-19 pandemic, and have been examined for the purposes of concept clarification and to understand the experiences.^6,8 In an epistemological theory study, the experiences of stroke caregivers were explored in Hong Kong during COVID-19.⁸ The 5 themes that emerged in that study included i) care service adversities, ii) additional caregiving workload and strain, iii) threatened relationship between caregivers and stroke survivors, iv) threats to caregivers’ physical and psychological well-being, and v) need for continuing caregiving roles.⁸ The study highlighted that the added psychological stress resulting from COVID-19 was detrimental to the patient–caregiver relationship.⁸ Therefore, added support through counseling, thorough caregiver training, telemedicine implementation, and the provision of COVID-19 protective resources (ie, hand sanitizer and disinfectants) are all integral in maintaining the caregiver role.⁸ Improvement of the caregiver experience further preserves the stroke survivor–caregiver relationship and the care goals of the stroke patients themselves.⁸

A second phenomenological study explored the experiences of informal caregivers while they were caring for adult patients in an inpatient rehabilitation unit following a new stroke diagnosis.⁶ The primary thematic category identified was COVID-19, due to the impact of visitor policy changes on the caregivers of patients.⁶ Four additional subthemes emerged, namely, i) competency of care, ii) feeling unprepared for discharge, iii) communication challenges, and iv) caregiver suggestions.⁶ The study highlighted the importance of frequent and effective communication between the multidisciplinary team, patient families, and informal caregivers during COVID-19 due to modified visitor policies.⁶ Improved communication promotes a high-quality caregiver experience and, ultimately, enhances the potential for a positive patient outcome.⁶

A preliminary search of PROSPERO, MEDLINE, the Cochrane Database of Systematic Reviews, and JBI Evidence Synthesis was conducted, and no current or in-progress systematic reviews on the topic were identified. However, one similar systematic review relates to the experiences of stroke survivors, their families, and unpaid carers. The review examines their involvement in individualized, patient-centered goal-setting as part of stroke rehabilitation, with goal-setting being the intended phenomenon of interest.¹⁵ However, this systematic review was conducted prior to COVID-19; therefore, the caregivers’ experiences are not relevant to the proposed review.¹⁵ Our review will examine the caregiving experiences of informal stroke caregivers only, focusing on their caregiving experiences during COVID-19.

The aim of the proposed systematic review is to identify, appraise, and synthesize the best available qualitative evidence on the caregiving experiences of informal caregivers of adult stroke patients during COVID-19. Further exploration and a more integrated understanding of this topic may inform recommendations to better support informal caregivers of stroke survivors.

Review question

What are the caregiving experiences of informal caregivers of adult stroke patients during the COVID-19 pandemic?

Inclusion criteria

Participants

This review will consider studies that investigate informal caregivers of adult stroke patients aged 18 years or over. Caregivers will be defined as individuals who provide ongoing assistance with everyday tasks.³ Informal caregivers will be defined as unpaid caregivers who provide care to someone with whom they have a personal relationship (ie, family or friend).⁵ This review will consider informal caregivers of any age, gender, or culture. No limitations will be placed on the timeframe of the patient’s stroke diagnosis. This review will include informal caregivers of both hemorrhagic and ischemic stroke patients.

Phenomena of interest

This review will consider studies that investigate the caregiving experiences of informal caregivers of adult stroke patients during the COVID-19 pandemic. Experiences may include, but will not be limited to, those related to physical and psychological burdens, roles, needs, and access to services. Caregiving will be defined as the provision of care services by individuals to people in need of regular ongoing assistance with everyday tasks.³

Context

Studies conducted in inpatient settings, rehabilitation settings, community care settings, or home care settings will be considered for inclusion. These settings may include, but will not be limited to, inpatient hospitals, acute inpatient rehabilitation facilities, skilled nursing facilities, long-term care facilities, independent living facilities, assisted living facilities, hospice, and homes.

Types of studies

This review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, qualitative description, action research, and feminist research.

Methods

The proposed systematic review will be conducted in accordance with the JBI methodology for systematic reviews of qualitative evidence¹⁶ and in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA).¹⁷ This protocol has been registered with PROSPERO (CRD42022326666).

Search strategy

The search strategy will aim to locate both published and unpublished studies. An initial limited search of MEDLINE and CINAHL was undertaken to identify articles on the topic. The text words contained in the titles and abstracts of relevant articles, and the index terms used to describe the articles, were used to develop a proposed search strategy for MEDLINE (see Appendix I). The search strategy, including all identified keywords and index terms, will be adapted for each included information source. The reference lists of all studies selected for critical appraisal will then be screened for additional studies.

For studies published in languages other than English, translations will be attempted through Google Translate and/or authors will be contacted to assist with translation or clarification of study relevance. Studies published from 2019 to the present will be included as COVID-19 was first identified in 2019.¹⁸

The databases to be searched include MEDLINE (PubMed), CINAHL (EBSCO), Embase, Web of Science, and PsycINFO (EBSCO). Sources of unpublished studies and gray literature will include ProQuest Dissertations and Theses (ProQuest), MedNar, and the American Heart Association website.

Study selection

Following the search, all identified citations will be collated and uploaded into EndNote v.20 (Clarivate Analytics, PA, USA), and duplicates removed. Following a pilot test, titles and abstracts will be screened by 2 independent reviewers for assessment against the inclusion criteria. Potentially relevant studies will be retrieved in full and their citation details imported into the JBI System for the Unified Management, Assessment and Review of Information (JBI SUMARI; JBI, Adelaide, Australia).¹⁹ The full text of selected citations will be assessed in detail against the inclusion criteria by 2 independent reviewers. Reasons for exclusion of full-text studies that do not meet the inclusion criteria will be recorded and reported in the systematic review. Any disagreements that arise between the reviewers at each stage of the study selection process will be resolved through discussion or with a third reviewer. The results of the search will be reported in full in the final systematic review and presented in a PPRISMA flow diagram.¹⁷

Assessment of methodological quality

Eligible studies will be critically appraised by 2 independent reviewers for methodological quality using the standard JBI critical appraisal checklist for qualitative research.¹⁹ Authors of papers will be contacted to request missing or additional data for clarification, where required. Any disagreements that arise between the reviewers will be resolved through discussion or with a third reviewer. The results of critical appraisal will be reported in narrative format and in a table. All studies will be included in the review, regardless of methodological quality; however, the authors will narratively present any potential biases of results based on the quality of the included studies.

Data extraction

Data will be extracted from included studies by 2 independent reviewers using the standardized JBI data extraction tool.¹⁹ The extracted data will include specific details about the populations, context, culture, geographical location, study methods, and the phenomena of interest for this review. The findings and their illustrations will be extracted verbatim and assigned a level of credibility. Any disagreements that arise between the reviewers will be resolved through discussion or with a third reviewer. Authors of papers will be contacted to request missing or additional data, where required.

Data synthesis

Qualitative research findings will, where possible, be pooled using JBI SUMARI using the meta-aggregation approach.¹⁹ This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings and categorizing these on the basis of similarity in meaning. These categories will then be subjected to a synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the findings will be presented in narrative format. Only unequivocal and credible findings will be included in the synthesis.

Assessing confidence in the findings

The final synthesized findings will be graded according to the ConQual approach for establishing confidence in the output of qualitative research synthesis and presented in a Summary of Findings (SoF).²⁰ The SoF will include the major elements of the review and detail how the ConQual score was developed. Included in the SoF will be the title, population, phenomena of interest, and context of the review. Each synthesized finding from the review will then be presented, along with the type of research informing it, score for dependability and credibility, and the overall ConQual score.