Sage Journals: Discover world-class research

Abstract

Introduction: Stroke is a rapidly progressive local or pervasive neurological disorder. Stroke survivors and their families experience a heavy burden of physical and psychological symptoms that are frequently left unaddressed. They often feel unprepared to transition into the post-stroke phase and constantly seek help to manage symptoms, adapt to new strategies, and navigate medical decisions. Palliative care (PC) approach can be helpful for them. Although PC is an essential element of treatment in stroke units, the phrase “PC” is often misunderstood as equivalent to end-of-life care or the termination of treatment. As a result, there are few referrals of stroke patients to specialized palliative care services, typically happening only at the time of death. Methods and Analysis: This research is sequential mixed-method exploratory analysis. It will focus on the concept of PC, its characteristics, antecedents, and consequences for stroke survivors, in addition to the creation and psychometric evaluation of a specific PC questionnaire. It includes two phases: qualitative and quantitative phase. In qualitative phase the concept of PC in acute stroke survivors will be explored by using the hybrid concept analysis technique. It includes three stages: (a) theoretical; (b) fieldwork, and (c) analytical. In quantitative phase a PC questionnaire based on the concept explained in the qualitative phase will be developed and its psychometric properties will be evaluated. It will involve producing items, determining face validity, content validity, construct validity, and reliability. Conclusion: The findings may assist in comprehending the accurate concept of palliative care in stroke patients and result in the integration of palliative care nurses and physicians as part of the treatment team for this patient group. It may result in the design of educational packages and related educational software for patients and their families to support the care of stroke patients. Additionally, the results may lead to the establishment of essential minimum training requirements in the area of palliative care following a stroke for treatment teams.

Graphical Abstract

Keywords

palliative care questionnaire stroke survivors terminal care

Background

According to the World Health Organization (WHO), stroke is a rapidly progressive local or pervasive neurological disorder originating in cerebral vessels that lasts for more than 24 hours or leads to death (Sacco et al., 2013). Clinically, stroke is an acute focal neurological defect attributed to vascular damage (infarction, bleeding) of the central nervous system. It is the second leading cause of death and the third leading cause of disability worldwide. Most strokes (85%) are ischemic, mainly caused by small atherosclerosis and embolism of large arteries. These are especially important in young patients (under 50) (Bani Ardalan et al., 2022; Murphy & Werring, 2020). The incidence and mortality of stroke varies between countries, geographical regions and ethnicities (Katan & Luft, 2018). In all European Union (EU) countries, stroke is the main cause of adult disability, affecting 1.1 million residents of Europe annually and causing 440,000 deaths a year. The number of people living with strokes is estimated to increase to 27% in the EU between 2017 and 2047 (Wafa et al., 2020). In the United States (US), stroke is also at the forefront of major neurological disorders in terms of the number of absolute years lost due to disease (Feigin et al., 2021). In Asia, which accounts for more than 60% of the world’s population and most of its countries are “developing”, the disease is a serious problem (Venketasubramanian et al., 2017). The overall burden of stroke in Iran is also increasing among the middle-aged population (50 to 69 years-old) (Fallahzadeh et al., 2022).

Many survivors of stroke attacks are dealing with at least one surviving complication of the disease upon discharge from treatment centers. These patients and their families experience a heavy burden of physical and psychological symptoms that are frequently left unaddressed (Jafari-Golestan, 2024; Schutz & Creutzfeldt, 2023). Additionally, stroke survivors face social and cultural challenges that arise from their dependence on others because of mobility issues, reduced sensory perception, and decreased activity levels. These challenges significantly impact their daily lives, especially routine activities like bathing, getting dressed, and using the restroom (Alhalabi & Bani Hani, 2023; Cowey et al., 2021; Ndiok et al., 2020).

Families and caregivers of stroke survivors face many challenges. In the acute phase of the illness, they witness the rapid and unexpected decline of a loved one. They are also responsible for making decisions on behalf of the patient, especially in situations requiring immediate choices (Schutz & Creutzfeldt, 2023). Stroke survivors and their families often feel unprepared to transition into the post-stroke phase. They constantly seek help to manage symptoms, adapt to new strategies, and navigate medical decisions (Kendall et al., 2018).

The uncertain prognosis of stroke and its prolonged recovery period complicate the requirements of patients and their families. This may lead to a range of difficulties for survivors and their families regarding psychological, social, spiritual, financial, and physical needs that are frequently neglected in practice. At this stage, adopting a palliative approach can be helpful. Palliative care (PC) has been implemented and recognized as suitable for all patients with severe illnesses, including stroke (Schutz & Creutzfeldt, 2023).

In 2016, the American Stroke Association released a statement on PC and stroke. Since that time, texts on PC have become more prevalent in relation to stroke (Cowey et al., 2021). The PC model was offered by WHO. WHO characterizes PC as a means to enhance the Quality of Life (QoL) for patients facing incurable and life-threatening illnesses, along with their families, focusing on the period from diagnosis to post-mortem (Hökkä et al., 2021). According to the WHO, while 40 million individuals require PC each year due to life-limiting conditions, merely 14% of these individuals have access to and benefit from PC (Namasivayam et al., 2022).

According to the conventional model of PC, this type of care is solely associated with the final days of life and is conducted for patients suffering from cancer, while the updated perspective of PC is the science and art of enhancing the quality of life for every patient, which does not respond to routine healthcare. This care ought to be offered not just in the final phases of life, but also from the onset of diagnosis to assist in managing the symptoms of the illness throughout the extended years of living with a chronic condition (Scheerens et al., 2020; Yang-Huang et al., 2022).

Currently, there is no cohesive approach to PC in the treatment of stroke survivors that allows for an appropriate time to initiate PC (Steigleder et al., 2019). The literature review suggests that although PC is an essential element of treatment in stroke units, the phrase “palliative care” is often misunderstood by stroke professionals, survivors, and their families as equivalent to end-of-life care or the termination of treatment. As a result, there are few referrals of stroke patients to specialized palliative care services, typically happening only at the time of death. For example, research conducted by Amber et al. indicated that a considerable number of stroke patients did not receive PC, even among those who passed away in the hospital. These results underscore the missed chances for PC to ease suffering following a severe stroke. The distinctive progression of the illness after an acute stroke demands a more profound understanding of how PC can be effectively employed for this patient group (Comer et al., 2022).

Literature indicates that many healthcare providers are unaware of the importance of addressing the social, emotional, and spiritual needs of patients. This represents a significant clinical deficit. A treatment team responsible for caring for survivors after a stroke should be able to recognize patients and families who could benefit from receiving PC interventions and develop the necessary plans (Govind et al., 2023). Given the lack of a standardized framework for PC in the treatment of stroke survivors, especially regarding the optimal timing for initiating such care, and the tendency to limit its use to end-of-life stages, there is a need for research that explores the concept, characteristics, antecedents, and consequences of PC for stroke survivors. Additionally, creating a tool tailored to the specific aspects of PC for this population, while taking into account the cultural context, is vital. Proper and timely implementation of PC can improve the QoL for patients and their families, decrease hospital readmission rates, and subsequently lower healthcare expenses. Consequently, this study is designed with the purpose of tackling these important issues.

Objectives

The overall goal of this proposed study is to explore the concept, characteristics, antecedents, and consequences of PC and develop a tool for stroke survivors. The specific objectives are as follows: (a) exploring the concept of PC in stroke survivors; (b) designing a specific PC questionnaire for stroke survivors; (c) determining the constituent items, dimensions, and subscales of the specific PC questionnaire for stroke survivors; (d) determining the face validity; the content validity, and the construct validity of the specific PC questionnaire for stroke survivors; (e) determining the internal consistency , and the stability (reliability) of the specific PC questionnaire for stroke survivors.

Methodology and Method

This research is sequential mixed-method exploratory analysis. It will focus on the concept of PC, its characteristics, antecedents, and consequences for stroke survivors, in addition to the creation and psychometric evaluation of a specific PC questionnaire for these individuals. It includes two phases: qualitative phase (exploring the concept of PC in acute stroke survivors using the hybrid concept analysis technique), and quantitative phase (creation of items for a special PC questionnaire for acute stroke survivors and evaluation of its validity and reliability).

The study will investigate and elucidate the concept of palliative care in patients who have survived acute strokes via a qualitative method (hybrid concept analysis). Subsequently, throughout the quantitative phase of the research, the outcomes from the qualitative stage will be used to develop and confirm the instrument. In the quantitative phase, the psychometric research approach will be utilized to finalize and validate the questionnaire. Following the initial qualitative data, the quantitative phase will then be conducted. To address the inquiry of the first phase of this research, which is qualitative, the researcher will adopt a constructivist approach to develop themes. To address the inquiry of the second phase, which is quantitative, they will transition from a constructivist to a positivist perspective to analyze the themes generated using a quantitative approach. There are several theories regarding the construction of instruments, such as Item Response Theory (IRT) and Classical Test Theory (CTT). Numerous measurement tools currently employed in health research are founded on the principles and techniques of classical test theory (CTT) (DeVellis, 2006). Given that CTT has been utilized to create many of the instruments in nursing research, this theory will also be implemented in the quantitative phase of this study to develop the instrument. Classical Test Theory states that the steps involved in creating an instrument are:

(1) Defining the concept using analysis and ultimately determining its indicators.

(2) Designing the instrument according to the Likert rating scale or meaning differentiation

(3) Reviewing the questions by experts and specialists in terms of accuracy, suitability for the test specifications, identifying technical flaws in question construction, writing, and readability

(4) Testing preliminary questions on a limited number of research units that represent the research community

(5) Conduct a field test and implement all questions in their final outline form in a large sample representative of the target population of the research.

(6) Conduct question analysis with the aim of identifying questions with a high internal consistency scale.

(7) Select and retain questions with higher coefficients.

(8) Conduct studies on the validity of the instrument.

(9) Assess the reliability of the instrument.

(10) Collect instrument norms.

(11) Publish the results of the instrument preparation (Grove et al., 2014).

Recruitment and Participant Selection

This study will be divided into two primary phases: qualitative and quantitative. The phases of the research are outlined in detail below.

Phase 1: Qualitative Analysis

The initial phase of this research, grounded in Classical Test Theory, is the qualitative phase, which will be conducted through concept analysis utilizing a hybrid approach. A hybrid method for concept analysis has been advocated by Schwartz-Barcott and Kim. The hybrid model relies on developing concepts through a qualitative analysis of phenomena in their actual locations. Concept development through a hybrid model integrates both inductive and deductive approaches, allowing for a form of synthesis; thus, it can enhance concepts that have diverse applications. This framework includes three stages: (a) theoretical (deductive approaches); (b) fieldwork and investigation (inductive approaches), and (c) analytical (Schwart-Barcott & Kim, 2000).

(a) Theoretical stage: during this stage a literature review on the topic of PC for stroke survivors will be conducted using international database including Google Scholar, ScienceDirect, Ovid, PubMed, ProQuest, Scopus, Web of Science, and Persian national database and the country’s medical research information portal including SID, Magiran, IronDoc. The steps involved in conducting the literature review for this research are:

(1) Defining the research question: in this step research questions related to the concept of PC will be defined.

(2) Identifying relevant studies, 3. Selecting articles: At these steps, databases search will be start. The search will be conducted using Medical Subject Headings (MESH) or keywords in databases following the guidelines specific to each database with no limits on time or language. The keywords based on MESH are as follows: “Cerebrovascular Accident, Cerebral Stroke, Cerebrovascular Apoplexy, Brain Vascular Accident, Cerebrovascular Stroke, Apoplexy, CVA (Cerebrovascular Accident), Acute Stroke, Acute Cerebrovascular Accident, Palliative Care, Supportive Care, Palliative Supportive Care, Palliative Treatment, Palliative Therapy, Palliative Surgery”.

(4) Collecting data and producing charts based on the collected information, and 5. Organizing and presenting the results (Arksey and O'Malley, 2005): At these steps, articles focusing on definitions and conceptual importance, characteristics, predictors, and outcomes will be selected, and the similarities and differences between them will be examined. Data analysis will occur in the theoretical stage through text content analysis.

(b) Fieldwork stage: The second stage of the hybrid concept analysis, which will take place alongside the first stage, is the fieldwork stage, aimed at exploring the concept of PC in individuals recovering from acute strokes. In this regard, the most effective method for exploring, understanding, and discovering the realities of the phenomenon under investigation is to apply the qualitative research methodology. The sampling approach during this phase is purposeful and includes nurses from the intensive care unit, neurology and stroke departments, as well as neurologists, critical care professionals, family members of stroke survivors, and stroke survivors who are able to communicate. The inclusion criteria will comprise: having a minimum of one year of professional experience and at least six months of relevant unit experience for nurses, and the ability to communicate verbally or in writing for stroke survivors. If necessary, based on the interview process, other individuals may also be included in the qualitative phase of the research. The exclusion criteria for the study are as follows: stroke survivors who were able to communicate verbally and in writing at the beginning of the research but are no longer able to communicate due to disease progression will be excluded. Interviews will be conducted in the setting and at the time preferred by participants. During this stage, the interviews will initiate as unstructured and then shift to a semi-structured format that includes some broad, entirely open-ended questions. Interviews will start with general questions and then progress according to the interviewees' answers by probing questions.

The Examples of questions that will be asked in the interview include:

(1) Questions related to the medical staff (doctors and nurses) will be:

- What is your experience with palliative care, especially in stroke survivors?

- When you hear the term palliative care, what thoughts come to mind?

- Have you previously cared for stroke survivors in need of palliative care? If so, how was the experience and what treatments were provided?

- How is palliative care provided at the hospital where you are employed? Who is responsible for determining the need for palliative care and when it should be initiated?

- Based on your experiences, what are the factors that influence and the barriers that hinder the

Implementation of palliative care in your hospital?

(2) Questions related to the patients and their family members will be:

- How long has it been since you or your loved one had a stroke?

- What were your initial feelings and challenges when you received the stroke diagnosis?

- How were you or your loved one cared for following the stroke diagnosis?

- Were you directed to a specific facility or department for palliative care? If so, which facility or department was it and what services were provided there?

Audio will be recorded, and transcribed verbatim.

The sampling will continue until data saturation. The length of each interview will vary depending on the individual interviewed. Data analysis during this stage will employ qualitative content analysis.

The steps of qualitative content analysis include: specifying the research problem, formulating questions and objectives, defining and specifying variables, sampling and selecting units of analysis, coding and categorization, analyzing and inferring results, and reporting (MomeniRad, 2014).

© Conceptual Analysis or Synthesis Stage

A combined approach will be used for the final stage of concept analysis, in which a comprehensive assessment of how well the first two stages were integrated will be carried out. A comprehensive definition that includes all of the characteristics mentioned in the previous stages will be produced at this stage by combining the definitions and concepts gathered from the first two stages. Qualitative data will be analyzed inductively. The software MAXQDA version 21 will facilitate data management and content analysis; quantitative data will be analyzed by using SPSS version 21.

Phase 2: Quantitative Analysis

Based on the results of the qualitative phase, a decision will be made on which aspect of the palliative care concept to implement. In other words, the design and development of the questionnaire will be based on concept explained in the qualitative phase. This questionnaire will be developed through various stages of development and psychometric evaluation of a questionnaire, which will involve producing items, determining face validity, content validity, construct validity, and reliability. These stages will be explained in detail in the following sections:

Producing the Items of the Questionnaire

The categories, subcategories, and item pool related to the concept under investigation in this study will be extracted based on the findings of the first phase of the study, which includes the qualitative phase (consisting of three steps: theoretical, fieldwork, and analytical). After extracting the items, the response rate for each item or question will be determined. Questions or phrases will be written in a logical order and similar items will be placed in a group.

Face Validity

Face validity will be conducted using both quantitative and qualitative methods. To conduct qualitative face validity, interviews will be held with several individuals from the target group. These participants will be asked to read the items and explain their understanding of the items to the researcher, a process known as “think aloud.” They are also questioned about the difficulty level, consistency, and ambiguity of the items, as well as whether any items should be removed or kept in the instrument. The items will be revised based on the feedback from this group. This iterative process will continue until the items are easily understood by the individuals and no further changes are recommended (Almanasreh et al., 2019; Taghizadeh et al., 2017).

Quantitative face validity will be measured by calculating the item impact score. To measure it, a number of expert panel and participants will be asked to evaluate the items in terms of their importance and give each item a score from 1 to 5, depending on the level of importance. A score of 1 indicates the lowest and a score of 5 indicates the highest level of importance. The impact score for each item will be calculated as the product of the importance of an item and its number of repetitions. An impact score greater than 1.5 will be considered appropriate (Allen et al., 2023; Taghizadeh et al., 2017; Taherdoost, 2016).

Content Validity

Content validity will be conducted using both quantitative and qualitative methods. To determine content validity in a qualitative manner, a group of professionals in the field of stroke survivor care and treatment, including neurologists, nurses, and critical care specialists, will be asked to provide their written opinions as part of the qualitative content validity study. It will be emphasized that grammar, wording, item allocation, scaling, and completion time should all be considered when evaluating the qualitative content validity. Once expert opinions are collected, necessary modifications to the instrument will be made.

To quantitatively determine content validity, the Content Validity Ratio will be used to ensure that the most crucial and accurate content (question necessity) has been selected. Subsequently, the content validity index will be used to ensure that the instrument’s questions are effectively constructed to measure the content. In order to evaluate the questionnaire’s content validity, a group of medical and nursing specialists will be contacted to rate each question as “necessary,” “useful but not necessary,” or “not necessary.” The answers will be calculated using the CVR formula and compared to the Lawshe table (30). The CVI will be assessed using the Waltz and Basel content validity index (31), following the determination and calculation of the CVR. The questionnaire will be given to the same experts again to calculate the CVI. They will be asked to rate each question on a four-point Likert scale based on relevance, simplicity, and clarity (e.g., 0: irrelevant, 1: somewhat relevant, 2: relevant, 3: completely relevant). A CVI score above 0.79 will indicate acceptance of the items (29) (32). The Content Validity Ratio will then be used to quantitatively assess the validity of the content and ensure that the most crucial and accurate content (question necessity) has been selected. Subsequently, the content validity index will be used to ensure that the instrument’s questions are effectively constructed to measure the content. In order to evaluate the questionnaire’s content validity, a group of medical and nursing specialists will be contacted to rate each question as “necessary,” “useful but not necessary,” or “not necessary.” The answers will be calculated using the CVR formula and compared to the Lawshe table (Lawshe, 1975). The CVI will be assessed using the Waltz and Basel content validity index, following the determination and calculation of the CVR. The questionnaire will be given to the same experts again to calculate the CVI. They will be asked to rate each question on a four-point Likert scale based on relevance, simplicity, and clarity (e.g., 0: irrelevant, 1: somewhat relevant, 2: relevant, 3: completely relevant). A CVI score above 0.79 will indicate acceptance of the items (Taherdoost, 2016).

Construct Validity

Construct validity is a measure of how well the outcomes of using measures align with the theories that the test is based on. It also shows how well the measurement captures the idea according to relevant theories. Instead of being restricted to a single indicator or set of observable traits, a construct comprises a collection of related variables. Important steps in researching construct validity include developing hypotheses regarding the concepts being studied, testing these hypotheses, and determining how well the results correlate with the original measurement. High construct validity is indicated by a high correlation coefficient, and vice versa. Therefore, the degree to which the prepared questionnaire’s items are grouped around a theoretical construct and are either correlated (internal consistency) or different should be ascertained. If the items on the test have a relationship with one another, then the test is construct valid. Otherwise, there is no construct validity in the questionnaire (Taherdoost, 2016). Different methods for determining construct validity include: hypothesis testing, convergent validity, divergent validity, known groups, discriminant validity, factor analysis (Arabkhani et al., 2023).

In this study, exploratory factor analysis (EFA) using the Principal Component Analysis (PCA) method will be employed, because little information is available about the construct under study. In fact, Factor analysis summarizes and classifies a large number of variables or items by analyzing their internal correlations and grouping them into a small number of factors. The goal is to identify basic patterns of relationships between the variables. In the PCA method, the researcher aims to determine the number of factors that can account for the highest variance in the data related to the topic being measured. This process helps reduce the number of variables and identifies key elements that form a factor and ultimately a construct. As a result, it aids in the organized grouping of elements and the development of factors to evaluate a topic. This method is particularly suitable for variables assessed using a Likert scale. To conduct factor analysis, the sampling adequacy test (KMO) will be initially calculated to ensure the sample size is sufficient. Then, Bartlett’s sphericity test will be used to confirm that there is a non-zero correlation among the variables, as this correlation forms the basis of factor analysis. The number of factors will be determined based on eigenvalues and the scree plot diagram. Components with absolute loading values of 0.4 or higher will be considered, while those below this threshold will be eliminated (Floyd & Widaman, 1995). EFA will be performed using SPSS version 21 software.

Reliability With Internal Consistency and Consistency Methods

A questionnaire’s reliability indicates how well the measurement tool yields consistent results under the same circumstances. One of the qualities of a measurement tool, such as a questionnaire, interview, or other social science test, is reliability. The reliability coefficient typically ranges from 0 (no correlation) to +1 (complete correlation). The reliability coefficient shows how well the measuring device captures the subject’s variable and transient traits, as well as their stable traits. It should be mentioned that a test’s reliability can differ depending on the circumstance and the group. Methods such as re-administration (test-retest method), parallel method (peer), classification method (split in half), Koder-Richardson method, and Cronbach’s alpha method are used to determine a measuring instrument’s reliability coefficient (Ahmed and Ishtiaq, 2021).

Reliability Assessment

We will assess reliability once before conducting factor analysis and once after. Depending on the scale of the instrument we design, we will use either the internal consistency method (Cronbach’s alpha) or the test-retest method.

Assessing Internal Consistency (With Cronbach’s Alpha)

Cronbach’s alpha is one of the most widely used techniques for assessing internal consistency. Internal consistency addresses the question of whether the items in an instrument are conceptually compatible with each other. The alpha coefficient is the most popular statistical technique for proving internal consistency, as it is the only sample-dependent reliability indicator that only needs to be administered once. For example, an alpha value of 0.9 or higher is considered excellent, 0.7 to 0.9 is good, 0.5 to 0.7 is fair, and less than 0.5 is unacceptable (47).

Assessing the Questionnaire’s Stability Through the Test-Retest Method

The designed questionnaire will be distributed to multiple participants at 2-week intervals as part of the retest method. The intraclass correlation index will then be used to compare the scores earned over the course of these two weeks. The intraclass correlation should be at least 0.4 (Ahmed & Ishtiaq, 2021).

The project is expected to last 24 months, with varying involvement of the participators and coordinated by the Principal Investigator and her research group, with the support of a professional professor with advanced knowledge of qualitative methodologies (Table 1).

Table 1.

Project Chronogram

Month	Aim
1	Create the monitoring and coordination group for the project
1–3	Write the proposed design and theoretical framework
4-5	Getting the ethics committee’s approval
6–8	Phase 1: Qualitative analysis: Theoretical phase
9–11	Phase 1: Qualitative analysis: Fieldwork stage
12-13	Phase 1: Qualitative analysis: Conceptual analysis or synthesis
14–16	Phase 2: Quantitative analysis: Extracting the instrument items based on the categories and subcategories related to the concept
17–20	Phase 2: Quantitative analysis: Examining the validation of the designed questionnaire by using face validity, content and construct validity, as well as reliability using internal consistency and stability methods
21–23	Write up and publish results
24	Public presentation of results

Sample Size

In the quantitative phase, which focuses on measuring validity and reliability, the size and number of samples will be determined after the qualitative phase and in consideration of the items in the designed instrument. However, as a general guideline, the recommended sample sizes for different stages of the quantitative phase are as follows: Face validity: 10 to 15 individuals, Content validity: 10 to 15 individuals, Construct validity: 5 to 10 individuals per item included in the questionnaire, Calculation of Cronbach’s alpha for Construct validity: at least 20 individuals, Reliability assessment using the internal consistency method (Cronbach’s alpha): the same sample size used for Construct validity.

Data Analysis

The data analysis approach related to the quantitative phase are mentioned above (validity and Reliability sections). The data analysis approach related to the qualitative phase will be presented in the following section (Table 2).

Table 2.

Data Analysis in Each Stage of the Study

Data analysis in each stage
The phases of the study		The way of data analysis
Qualitative phase	field work stage	Granheim and Landman (eight-step) qualitative content analysis approach
Quantitative phase	Face validity	A multi-member specialized panel
	Content validity	Using stroke professionals’ opinion, Content validity ratio (CVR), content validity index (CVI)
	Construct validity	Exploratory factor analysis tests: KMO: Kaiser-Mayer-Olkin, Bartlett’s test of sphericity
	Reliability	The test-retest method and the internal consistency method (Cronbach’s alpha)
	Stability	Test-retest method

At the Field Work Stage of the First Phase

Data analysis will utilize the Granheim and Landman (eight-step) qualitative content analysis approach. This approach was first presented in 2004 and revised in 2020. Qualitative content analysis is a method used to study the meaning contained within a message. This is achieved by systematically classifying and organizing the content of a communication into categories that describe the topics, themes, and context of the message. Qualitative content analysis steps are shown in Table 3 (Shava et al., 2021; Graneheim & Lundman, 2004; Lindgren et al., 2020). After each interview, the researcher will analyze the interview content by reading it multiple times to ensure a comprehensive understanding. Next, the researcher will identify the semantic components of the interview and conduct preliminary coding. The purpose of coding is to condense and summarize the semantic units. The collection of multiple codes leads to the creation of categories. A category consists of content that is conceptually similar and relates to a specific subject. A category may include subcategories. Categories are internally consistent and may be inconsistent when compared to other categories. Ultimately, a theme or subject will be developed (Graneheim & Lundman, 2004). To enhance the rigor of the study, Lincoln and Guba’s five criteria— Credibility, Dependability, Confirmability, Transferability, and authenticity — will be taken into account (Elo et al., 2014). MAXQDA 21 software will be used for the initial management of qualitative data.

Table 3.

Qualitative Content Analysis Steps

• Formulating research questions to be answered

• Selecting the sample to be analyzed

• Defining the categories to be applied

• Outlining the coding process and the coder training

• Implementing the coding process

• Determining the trustworthiness

• Analyzing the results of the coding process

Ethics

The researchers will adhere to ethical principles throughout all phases of the research. All researchers and collaborators commit to adhering rigorously to the Declaration of Helsinki. All interviews will be gathered anonymously, and after creating the tool for collecting quantitative data, anonymous surveys will be formulated and given to the participants. The research participants will also be informed that taking part in this study is entirely voluntary and that they are free to exit the research setting at any point during the study if they choose not to continue responding to the questions. Ethics Approval for the study has been obtained from the Research Ethics Committees of the School of Nursing and Midwifery & Rehabilitation - Tehran University of Medical Sciences (IR.TUMS.FNM.REC.1403.100). Informed written consent will be obtained from all participants.

Discussion

This study aims to explain the concept of palliative care in stroke survivors. The literature review indicates that while palliative care is a crucial component of treatment in stroke units, the term “palliative care” is frequently misinterpreted by stroke professionals, survivors, and their families as synonymous with end-of-life care or the cessation of treatment. Consequently, there are limited referrals of stroke patients to specialized palliative care services, typically occurring only at the time of death (Comer et al., 2022). Literature shows that many healthcare providers lack awareness of the importance of addressing the social, emotional, and spiritual needs of patients, which signifies a substantial clinical gap.

Therefore, the current study aims to offer a more thorough understanding of palliative care after stroke by utilizing a mixed-methods approach that integrates qualitative and quantitative research techniques.

Transferability, Applicability and Opportunity of the Proposal

The findings of this study may be generalizable to all stroke patients and their families, and may also provide valuable insights for nurses—particularly those working in emergency departments, neurology wards, and intensive care units (ICUs) throughout Iran.

At the Healthcare Level

The findings may assist in comprehending the accurate concept of palliative care in stroke patients and result in the integration of palliative care nurses and physicians as part of the treatment team for this patient group.

At the Educational Level

The findings may result in the design of educational packages and related educational software for patients and their families to support the care of stroke patients. Additionally, the results may lead to the establishment of essential minimum training requirements in the area of palliative care following a stroke for treatment teams.

On a Policy Level

Our findings probably suggest that we need to give significant focus to the matter of palliative care in stroke patients and should not restrict this form of care to just terminally ill and end-of-life patients.

Alongside scientific publications and conferences, we intend to share the findings with various professional, patient, and public organizations, as well as through press statements, the media, and policy documents. Ultimately, the methods and outcomes could provide a foundation for upcoming studies, as they illustrate the preliminary circumstances.

Footnotes

ORCID iD

Zakiyeh Jafaryparvar

Ethical Approval

Ethics Approval for the study has been obtained from the Research Ethics Committees of the School of Nursing and Midwifery & Rehabilitation - Tehran University of Medical Sciences (IR.TUMS.FNM.REC.1403.100).

Informed Consent

Informed written consent will be obtained from all participants.

Author Contributions

Zakiyeh Jafaryparvar: made a significant contribution to the concept, design, acquisition, analysis or interpretation of data. Writing – Original Draft. Approved the final version of the article for publication. Fatemeh Bahramnezhad: made a contribution to the concept and design of the study. Review & editing the article critically for important intellectual content. Approved the final version of the article for publication. Fatemeh Hajibabaee: made a contribution to the concept and design of the study. Review & editing the article critically for important intellectual content. Approved the final version of the article for publication. Mahdi Shafiee Sabet: made a contribution to the concept and design of the study. Review & editing the article critically for important intellectual content. Approved the final version of the article for publication. Nahid Dehghan Nayeri: made a significant contribution to the concept, design, acquisition, analysis or interpretation of data. Writing – Review & Editing the article critically for important intellectual content. Approved the final version of the article for publication.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

Data from this study are available by contacting the corresponding author, subject to a reasonable request.*

Appendix

References

Ahmed

Ishtiaq

(2021). Reliability and validity: Importance in medical research. JPMA: The Journal of the Pakistan Medical Association, 12(10), 2401–2406. https://doi.org/10.47391/JPMA.06-861

Alhalabi

M. N.

Bani Hani

S. H.

(2023). Quality of life among post-stroke Jordanian survivors: A prospective study. Working with Older People, 27(3), 165–176. https://doi.org/10.1108/wwop-08-2022-0033

Allen

M. S.

Robson

D. A.

Iliescu

(2023). Face validity. Hogrefe Publishing.

Almanasreh

Moles

Chen

T. F.

(2019). Evaluation of methods used for estimating content validity. Research in Social and Administrative Pharmacy: RSAP, 15(2), 214–221. https://doi.org/10.1016/j.sapharm.2018.03.066

Arabkhani

Dargahi

Ghorbani

Rushdi

(2023). Design and psychometrics of “health system development scale”. Journal of Hospital, 22(1), 71–86. https://jhosp.tums.ac.ir/article-1-6597-en.html

Arksey

O’Malley

(2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology, 8(1), 19–32. https://doi.org/10.1080/1364557032000119616

Bani Ardalan

Motalebi

S. A.

Shahrokhi

Mohammadi

(2022). Effect of education and telephone follow-up on care burden of caregivers of older patients with stroke. Salmand, 17(2), 290–303. https://doi.org/10.32598/sija.2022.2183.3

Comer

A. R.

Williams

L. S.

Bartlett

D'Cruz

Endris

Marchand

Zepeda

Toor

Waite

Jawed

Holloway

Creutzfeldt

C. J.

Slaven

J. E.

Torke

A. M.

(2022). Palliative and end-of-life care after severe stroke. Journal of Pain and Symptom Management, 63(5), 721–728. https://doi.org/10.1016/j.jpainsymman.2021.12.032

Cowey

Schichtel

Cheyne

J. D.

Tweedie

Lehman

Melifonwu

Mead

G. E.

(2021). Palliative care after stroke: A review. International Journal of Stroke: Official Journal of the International Stroke Society, 16(6), 632–639. https://doi.org/10.1177/17474930211016603

10.

Devellis

R. F.

(2006). Classical test theory. Medical Care, 44(11 Suppl 3), S50–S59. https://doi.org/10.1097/01.mlr.0000245426.10853.30

11.

Elo

Kääriäinen

Kanste

Pölkki

Utriainen

KyngäS

(2014). Qualitative content analysis: A focus on trustworthiness. Sage Open, 4(1), 2158244014522633.

12.

Fallahzadeh

Esfahani

Sheikhy

Keykhaei

Moghaddam

S. S.

Tehrani

Y. S.

Rezaei

Ghasemi

Azadnajafabad

Mohammadi

Koolaji

Shahin

Larijani

Farzadfar

(2022). National and subnational burden of stroke in Iran from 1990 to 2019. Annals of Clinical and Translational Neurology, 9(5), 669–683. https://doi.org/10.1002/acn3.51547

13.

Feigin

V. L.

Vos

Alahdab

Amit

A. M. L.

Bärnighausen

T. W.

Beghi

Beheshti

Chavan

P. P.

Criqui

M. H.

Desai

Dhamminda Dharmaratne

Dorsey

E. R.

Wilder Eagan

Elgendy

I. Y.

Filip

Giampaoli

Giussani

Hafezi-Nejad

Murray

C. J. L.

(2021). Burden of neurological disorders across the US from 1990–2017: A global burden of disease study. JAMA Neurology, 78(2), 165–176. https://doi.org/10.1001/jamaneurol.2020.4152

14.

Floyd

F. J.

Widaman

K. F.

(1995). Factor analysis in the development and refinement of clinical assessment instruments. Psychological Assessment, 7(3), 286–299. https://doi.org/10.1037/1040-3590.7.3.286

15.

Govind

Ferguson

Phillips

J. L.

Hickman

(2023). Palliative care interventions and end-of-life care as reported by patients post-stroke and their families: A systematic review. European Journal of Cardiovascular Nursing, 22(5), 445–453. https://doi.org/10.1093/eurjcn/zvac112

16.

Graneheim

U. H.

Lundman

(2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24(2), 105–112. https://doi.org/10.1016/j.nedt.2003.10.001

17.

Grove

S. K.

Gray

J. R.

Burns

(2014). Understanding nursing research: Building an evidence-based practice. Elsevier health Sciences.

18.

Hökkä

Melender

H.-L.

Lehto

J. T.

Kaakinen

(2021). Palliative nursing competencies required for different levels of palliative care provision: A qualitative analysis of health care professionals’ perspectives. Journal of Palliative Medicine, 24(10), 1516–1524. https://doi.org/10.1089/jpm.2020.0632

19.

Jafari-Golestan

(2024). Enhancing the health of elderly stroke patients in Iran and worldwide. Military Caring Sciences, 10, 213–218.

20.

Katan

Luft

(2018). Global burden of stroke. In Seminars in neurology (pp. 208–211). Thieme Medical Publishers.

21.

Kendall

Cowey

Mead

Barber

Mcalpine

Stott

D. J.

Boyd

Murray

S. A.

(2018). Outcomes, experiences and palliative care in major stroke: A multicentre, mixed-method, longitudinal study. Canadian Medical Association Journal, 190(9), E238–E246. https://doi.org/10.1503/cmaj.170604

22.

Lawshe

C. H.

(1975). A quantitative approach to content validity. Personnel Psychology, 28(4), 563–575. https://doi.org/10.1111/j.1744-6570.1975.tb01393.x

23.

Lindgren

B.-M.

Lundman

Graneheim

U. H.

(2020). Abstraction and interpretation during the qualitative content analysis process. International Journal of Nursing Studies, 108(1), 103632. https://doi.org/10.1016/j.ijnurstu.2020.103632

24.

Momenirad

(2014). Qualitative content analysis in research tradition: Nature, stages and validity of the results. Quaterly of Educational Measurement, 4(14), 187–222. https://jem.atu.ac.ir/article_92_en.html

25.

Munro

B. H.

(2004). Statistical methods for health care research (p. 105). Lippincott Williams & Wilkins.

26.

Murphy

S. J.

Werring

D. J.

(2020). Stroke: Causes and clinical features. Medicine, 48(9), 561–566. https://doi.org/10.1016/j.mpmed.2020.06.002

27.

Namasivayam

Bui

D. T.

Low

Barnett

Bridgman

Marsh

Lee

(2022). Use of telehealth in the provision of after-hours palliative care services in rural and remote Australia: A scoping review protocol. PLoS One, 17(1), Article e0261962. https://doi.org/10.1371/journal.pone.0261962

28.

Ndiok

A. E.

Oyira

Ncama

(2020). Holistic/Palliative management of patient’s health care and home situation in a depressed economy. In Suggestions for addressing clinical and non-clinical issues in palliative care. IntechOpen.

29.

Sacco

R. L.

Kasner

S. E.

Broderick

J. P.

Caplan

L. R.

Connors

Culebras

Elkind

M. S.

George

M. G.

Hamdan

A. D.

Higashida

R. T.

Hoh

B. L.

Janis

L. S.

Kase

C. S.

Kleindorfer

D. O.

Lee

J. M.

Moseley

M. E.

Peterson

E. D.

Turan

T. N.

Valderrama

A. L.

Council on Nutrition, Physical Activity and Metabolism . (2013). An updated definition of stroke for the 21st century: A statement for healthcare professionals from the American heart association/American stroke association. Stroke (1970), 44(7), 2064–2089. https://doi.org/10.1161/STR.0b013e318296aeca

30.

Scheerens

Pype

Van Cauwenberg

Vanbutsele

Eecloo

Derom

Van Belle

Joos

Deliens

Chambaere

(2020). Early integrated palliative home care and standard care for end-stage COPD (EPIC): A phase II Pilot RCT testing feasibility, acceptability, and effectiveness. Journal of Pain and Symptom Management, 59(2), 206.e7–224.e7. https://doi.org/10.1016/j.jpainsymman.2019.09.012

31.

Schutz

R. E.

Creutzfeldt

C. J.

(2023). Palliative care after stroke survival. In Handbook of clinical neurology (Vol. 191, pp. 3–11). Elseiver. https://doi.org/10.1016/B978-0-12-824535-4.00003-3

32.

Schwart-Barcott

Kim

H. S.

(2000). An expansion and elaboration of the hybrid model of concept development. Concept development in nursing foundations, techniques, and applications. 2nd Edition, Saunders, Philadelphia, 129–159.

33.

Shava

Hleza

Tlou

Shonhiwa

Mathonsi

(2021). Qualitative content analysis, utility, usability and processes in educational research. International Journal of Research and Innovation in Social Science, 5(7), 553–558.

34.

Steigleder

Kollmar

Ostgathe

(2019). Palliative care for stroke patients and their families: Barriers for implementation. Frontiers in Neurology, 10(6), 419731. https://doi.org/10.3389/fneur.2019.00164

35.

Taghizadeh

Ebadi

Montazeri

Shahvari

Tavousi

Bagherzadeh

(2017). Psychometric properties of health related measures. Part 1: Translation, development, and content and face validity. Payesh (Health Monitor), 16(3), 343–357. https://payeshjournal.ir/article-1-108-fa.html

36.

Taherdoost

(2016). Validity and reliability of the research instrument; how to test the validation of a questionnaire/survey in a research. International Journal of Academic Research in Management, 5.

37.

Venketasubramanian

Yoon

B. W.

Pandian

Navarro

J. C.

(2017). Stroke epidemiology in south, east, and south-east Asia: A review. Journal of Stroke, 19(3), 286–294. https://doi.org/10.5853/jos.2017.00234

38.

Wafa

H. A.

Wolfe

C. D.

Emmett

Roth

G. A.

Johnson

C. O.

Wang

(2020). Burden of stroke in Europe: Thirty-year projections of incidence, prevalence, deaths, and disability-adjusted life years. Stroke (1970), 51(8), 2418–2427. https://doi.org/10.1161/STROKEAHA.120.029606

39.

Yang-Huang

DoñATE-MartíNEZ

Garces

Campos

M. S. G.

Romero

R. V.

LóPEZ

M.-E. G.

Fernandes

Camacho

Gama

Reppou

Bamidis

P. D.

Linklater

Hines

Eze

Raat

(2022). Evaluation design of the patient-centred pathways of early palliative care, supportive ecosystems and appraisal standard (InAdvance): A randomised controlled trial. BMC Geriatrics, 22(1), 812. https://doi.org/10.1186/s12877-022-03508-3

Explaining the Concept of Palliative Care in Patients With Stroke,Development and Validation of a Questionnaire: A Mixed-Method Study Protocol