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Abstract

Introduction

Caregivers play a critical role in improving stroke survivors’ outcomes. Yet, they often encounter numerous challenges in their caregiving process, with the lack of rehabilitative services and poststroke follow-ups. While extensive research has explored caregiver challenges primarily in Western contexts, sociocultural factors significantly influence family caregiving experiences and roles, necessitating exploration within the Saudi cultural context.

Objectives

This study aimed to explore the experiences of family caregivers of stroke survivors in Saudi Arabia.

Method

A descriptive exploratory qualitative design was employed. Using purposive sampling, 20 family caregivers of stroke patients were recruited from three healthcare institutions. Data collection involved individual semi-structured interviews complemented by field notes. A thematic analysis approach was used for data analysis.

Results

Four major themes captured caregivers’ experiences and challenges: (a) emotional and psychological strain, (b) barriers to navigating healthcare systems, (c) disrupted daily living and social isolation, and (d) resilience through coping mechanisms.

Conclusion

This study enhances the understanding of caregivers’ experiences of stroke survivors in Saudi Arabia. While the findings are aligned with global literature, they also reveal culturally specific challenges and coping mechanisms that are unique to the Saudi context. These insights underscore the need for culturally sensitive practices, including caregiver education, mental health support, and community-based services. To improve continuity of care and caregiver well-being, healthcare policies should prioritize integrated support systems and long-term care planning tailored to family-centered models of caregiving.

Keywords

stroke caregivers qualitative experiences Saudi Arabia

Introduction

Stroke is a major cerebrovascular disease associated with high global mortality and disability rates, affecting nearly 15 million people annually (Feigin et al., 2022). One-third of stroke survivors endure lasting physical, cognitive, or emotional impairment, with up to 74% requiring assistance with daily activities and 50% requiring full support after hospital discharge (Rodgers et al., 2021). In Saudi Arabia, stroke prevalence and mortality are on the rise due to an ageing population, rapid urbanization, and lifestyle shifts (Basri et al., 2021). The national incidence exceeds 29 cases per 100,000 people each year (Alqahtani et al., 2020).

In Saudi culture, familism promotes caregiving as a moral and emotional duty, rooted in compassion, cultural norms, and reciprocal love (Alshammari et al., 2023). Spouses and children assume the full caregiving roles, providing emotional support, managing medications, and coordinating care (Alquwez & Alshahrani, 2021; Aziz et al., 2016). This care demands significant time, averaging 41 hr weekly (Oliva-Moreno et al., 2018). Caregivers’ availability can improve patients’ outcomes and reduce healthcare costs over time (Lu et al., 2019), however, the demands can cause stress, especially when caregivers lack training or resilience (Tziaka et al., 2024). Therefore, it is vital to identify caregivers’ needs and ensure their health, functionality, and support systems are maintained.

Review of Literature

Stroke survivors typically experience lasting deficits that require extensive support from family caregivers after discharge (Wongsa et al., 2023). In Saudi Arabia, inpatient rehabilitation typically lasts 45 days, after which patients return home with limited ongoing care (Temehy et al., 2023). This increases the psychological stress on caregivers, who exhibit higher anxiety and depression rates than the general population (Eriku et al., 2023; Villa-Gracia et al., 2024). They also suffer physical issues like chronic fatigue, sleep disturbances (Tziaka et al., 2024), muscle pain, and higher risk of chronic diseases (Kokorelias et al., 2019).

Within the Saudi Arabian context, caregivers face significant uncertainty as they navigate caregiving roles, intensifying their psychological burden (Alselami & Butcher, 2022). Nonetheless, many show notable resilience, particularly through reliance on spiritual and religious coping mechanisms (Alquwez & Alshahrani, 2021). This aligns with findings from other Islamic cultural contexts, highlighting faith as a crucial source of emotional resilience and strength for caregivers (Ismail et al., 2024; Mirhosseini et al., 2024).

Despite its challenges, caregiving also fosters personal growth, enhancing caregivers’ knowledge, skills, and emotional maturity (Mei et al., 2020). Similar caregiving experiences have also been reported in other non-Western contexts such as Ethiopia (Bekele et al., 2023), Nigeria (Farombi et al., 2024), and China (Zhu et al., 2024), where caregiving is heavily influenced by sociocultural norms, gender roles, and limited systemic support.

Much existing research on family caregiving challenges after stroke has been conducted predominantly in Western settings (Malewezi et al., 2022; Oliva-Moreno et al., 2018; Persson et al., 2017; Sexton et al., 2022), with limited data from Saudi Arabia. Considering the ethnic and cultural differences in family dynamics and caregiving behaviors, the Saudi context presents unique characteristics that warrant exploration. Research findings from Western contexts may not adequately reflect the culturally rooted expectations in Saudi Arabia, such as the prominent role of extended family, the influence of religious beliefs on caregiving practices, and gender-specific caregiving responsibilities. These contextual distinctions highlight the limitations of applying Western caregiving models to non-Western societies without cultural adaptation. Accordingly, this study contributes to the global body of literature by providing a culturally grounded investigation of caregiving in Saudi Arabia. It addresses a significant research gap and identifies locally relevant priorities for supporting caregivers. Specifically, the study aims to explore the experiences, needs, and coping strategies of family caregivers of stroke patients in Saudi Arabia, with an emphasis on culturally specific factors that shape caregiving outcomes.

Method

Design

An explorative, descriptive qualitative design was used using semistructured individual interviews with family caregivers of stroke patients. Qualitative descriptive is the design of choice when a straightforward description of a phenomenon is needed (Creswell, 2013), such as the exploration of stroke caregivers’ subjective experiences and the challenges they encounter.

Sample and Setting

A purposive sampling technique was used to recruit family caregivers of stroke patients from the medical inpatient wards and outpatient clinics at two governmental hospitals and a rehabilitation center. This technique enabled the recruitment of participants who varied in age, gender, marital status, relationship to the patient (e.g., child, spouse, and other relatives), educational level, and length of caregiving duration to ensure a maximum variation of caregivers’ experiences.

Inclusion and Exclusion Criteria

The inclusion criteria included participants who are 18 years and older; self-reporting being primary caregivers of stroke patients for at least a year, being related by blood or marriage to the stroke survivor and being able to speak and read Arabic. Participants were excluded from the study if they were under 18 years of age, had been providing care for the stroke survivor for less than one year, or were not related to the stroke survivor by blood or marriage. Additionally, individuals who were unable to speak or read Arabic, have cognitive impairments or severe mental health conditions that may affect their ability to provide informed consent or participate effectively in the interview were also excluded from the study.

Data Collection

Data were collected through digitally recorded face-to-face, semistructured individual interviews with 20 caregivers of stroke patients from February 2023 to June 2023. Gatekeepers, specifically ward and clinic nurses, were instrumental in recruitment. They identified eligible participants based on the inclusion criteria and distributed study information leaflet. These nurses were chosen due to their close interaction with caregivers and familiarity with patient–caregiver dynamics, ensuring a more targeted recruitment process.

To minimize selection bias, gatekeepers received both written and verbal instructions emphasizing the importance of approaching all eligible caregivers, regardless of their caregiving experiences or perceived interest in participation. Potential participants were given enough time to consider participation. Once they agreed, the research team introduced the study in detail, clarified procedures, and obtained written informed consent.

Interviews were scheduled at times and places chosen by the participants, ensuring comfort and convenience. Each interview lasted between 30 and 45 min and was conducted in Arabic to enable participants to express themselves naturally in their native language. Caregivers were interviewed alone to ensure privacy and encourage honest reflections. All interviews were audio recorded to capture participants’ narratives accurately. Confidentiality and anonymity were maintained throughout data collection and analysis. Audi files were stored in an encrypted, password-protected computer accessible only to the research team. Four qualified nursing researchers (A.T), (J.W), (F.A), and (J.A) conducted the interviews. A senior qualitative researcher (A.Y.T) provided intensive training to all researchers on interviewing procedures and research operational definitions. Training included a thorough review of semistructured interviewing techniques, a practice run using the interview guide and a discussion on ethical considerations. To ensure consistency of the information acquired, an interview guide was developed based on current literature and researchers’ prior experiences. Field notes were also recorded to capture nonverbal cues, context, and postinterview reflections. Data collection continued until no new themes emerged, suggesting that additional data collection would likely yield redundant information. This approach aligns with the principle of data saturation, which is widely recognized as a standard for ensuring comprehensive data collection in qualitative research (Guest et al., 2020). Saturation was monitored by the research team through concurrent data collection and analysis.

Data Analysis

Data were analyzed using Braun and Clarke's six-phase thematic analysis approach (Braun & Clarke, 2006): familiarization with the data, generation of initial codes, searching for themes, reviewing themes, defining and naming, and report writing. Before coding and analysis, audiorecordings were transcribed verbatim in Arabic by a bilingual research team and then translated into English. Back translation was conducted to ensure semantic and conceptual accuracy during the translation process. Culturally specific expressions were discussed in analytical meetings to preserve original meanings.

To begin, researchers read and re-read the English transcripts to familiarize themselves with the data and note initial impressions. Then they systematically coded segments of data that captured the depth and nuances of participants’ experiences. The codes were then compared and organized into broader categories, leading to the development of four major themes. A coding tree was developed to visually display the relationship between themes, subthemes, and initial codes, offering a transparent view of the analytical process. The resulting themes were subsequently reviewed and refined by revisiting the original transcripts to ensure an accurate representation of the caregivers’ experiences.

Ethical Considerations

This study was conducted following the Declaration of Helsinki (Rickham, 1964). Ethical approvals were obtained from the research ethics committee at the Faculty of Nursing and from the relevant ethics committees at each recruitment site prior to conducting the research. The researcher explained the purpose of the study, the risks and benefits of participation, and informed them that participation is completely voluntary, and they have the right to withdraw at any time without feeling obligated to give a reason. Furthermore, they were informed that only the research team would have access to their interview transcripts, and after the research project was completed, all the research data would be deleted. Data were identified by code numbers rather than by names on the demographic information sheet and interview transcripts to maintain confidentiality and anonymity.

Rigor

The four criteria of credibility, transferability, dependability, and confirmability were used to enhance the methodological rigor of this study (Yadav, 2022). Credibility was ensured through prolonged engagement with the data, including repeated readings of transcripts and regular analytic meetings to discuss emerging themes and interpretations. Transferability was addressed by providing rich, detailed descriptions of the study context and participant characteristics, as well as by including verbatim quotes to allow readers to evaluate the relevance of findings to other contexts. Dependability was enhanced by maintaining a transparent audit trail and engaging in peer debriefing to ensure consistency and accountability throughout the research process. Finally, confirmability was achieved through the researchers’ reflexivity, with field notes used to document assumptions, decisions, and potential biases. Together, these strategies contribute to the overall rigor and trustworthiness of the findings.

Results

In-depth semistructured individual interviews were conducted with 20 family caregivers of stroke patients. Demographic details are presented in Table 1. In this study, primary caregivers were defined as individuals who assumed the main responsibility for providing day-to-day care to the stroke survivor, while shared caregivers were those who divided caregiving duties with other family members. Overall, participants mostly described a dull picture of their daily routine as caregivers with varying challenges and responsibilities. Caregiving influenced them physically, psychologically, and socially, which can be described under four major themes, including (a) emotional and psychological strain, (b) barriers to navigating healthcare systems, (c) disrupted daily living and social isolation, and (d) resilience through coping mechanisms. Each theme is described below and illustrated with quotations from the anonymized interview data, which are set in italics in the text and followed by the code number of each interview.

Table 1.

Demographic Characteristics of the Study Sample.

Number of participants	20	Percentage
Gender
Male	8	40
Female	12	60
Age
20–29	6	30
30–39	4	20
40–49	8	40
>50	2	10
Marital status
Single	8	40
Married	9	45
Divorced	2	10
Widowed	1	5
Level of education
Less than high school	1	5
High school	3	15
College graduate	16	80
Occupational status
Paid employment	4	20
Temporarily not working	3	15
Retired	7	35
Unemployed	6	30
Caregiving duration
1–2 years	8	40
3–5 years	4	20
6–9 years	3	15
More than 10 years	5	25
Relationship to patients
Spouse	4	20
Son/daughter	14	70
Grandchild	2	10
No. of caregivers
Primary caregiver	4	20
Shared caregiving	16	80

Theme 1: Emotional and Psychological Strain

This prominent theme illustrated one of the major barriers caregivers faced while providing care. The psychological overload stemmed from multiple factors, including overwhelming care tasks, role transitions, financial strain, and changes in life expectations. The sudden onset of stroke and the subsequent heavy workload of caregiving placed families under immense pressure. This theme was especially pronounced among primary caregivers, who assumed the full caregiving role and often managed the physical and emotional demands without external support. Unlike shared caregivers, who reported some relief through the division of tasks among family members, primary caregivers often described a deep sense of isolation and emotional exhaustion. The constant demands led to feelings of being overwhelmed, a loss of independence, and in some cases, a complete shift in their professional or personal identities. One participant commented:

I used to work as a teacher for over 18 years, but when my husband got sick and was discharged from the hospital I was forced to stay home and take care of him. I didn’t have an option. I loved being a teacher. It is who I am. Or who I used to be. I still cannot get used to this change. I often feel lost. (C1)

Concerns about prognosis and illness progression created further psychological burdens on the caregivers. Caregivers reported feeling overprotective of the patients due to fear of deterioration or possible relapse in their health condition, which negatively affected their mental health. In several cases, primary caregivers expressed a persistent sense of being emotionally trapped, describing the weight of having to be vigilant at all times and the mental fatigue of anticipating potential relapses or complications. One participant explained:

Every day, I wake up wondering if what I am doing enough to keep them safe. Will they take a turn for the worse without me noticing? I can’t help but feel constantly scared that they relapse, or their condition deteriorates. I know that I am being so overprotective. The constant worry is exhausting, I feel like I’m losing myself in the process of trying to hold everything together for them. (C4)

Another caregiver described a similar experience of feeling emotionally confined:

It's like I’m stuck in a cycle that never ends. I try to stay strong, but I feel like I’m drowning in responsibility. Even when I’m physically away for a moment, my mind is still with them. I am always worried anticipating the next problem. There's no space left for me. (C7)

Caregivers felt a sense of hopelessness and mental strain when patients refused their care or help. They were saddened and frustrated by witnessing their loved ones struggle to carry on simple activities yet refuse help because they don’t accept their illness. This was an obstacle particularly faced by caregivers of male patients. One participant shared his feeling:

If I try to help him, he would push me away and refuse the help, saying that he doesn’t need help from me or from anyone and that he is still healthy … He did not allow me to assist him in going to the bathroom. Such situations make me feel hopeless. (C20)

Caregivers incur costs associated with direct medical costs, medications and home modification to assist with caring, all of which place a significant financial burden on some participants and exacerbate the feelings of stress and anxiety:

The physiotherapy session ranged from 350 to 500. Changing dressings was also necessary, which cost approximately 1000 to 2000 SR per month, excluding medication costs. Just thinking about this makes me feel anxious. I need three jobs to cover all the expenses. (C2)

Theme 2: Barriers to Navigating Healthcare Systems

This theme revolves around caregivers’ different experiences and perspectives on the healthcare system. Overall, participants reported poor communication from healthcare staff and challenges in locating necessary resources as impacting their overall well-being and family dynamics.

Most caregivers expressed a desire for better support from healthcare professionals and involvement in treatment decisions. They also complained of the complexity of the provided information about the patient's condition and that most of the information revolved around giving the medication, making it challenging to advocate effectively for their loved ones:

The team provided some information, but it was very simple, and the focus was entirely on the medications and the side effects, but when they spoke about the treatment plan, I felt like they were speaking a different language. I had to write down everything hard to remember. (C2)

For me, as a caregiver it was very psychologically tiring because I did not find any adequate care for her or me as a caregiver. I felt lost until I found a support group that guided me through the options available. (C11)

Few participants expressed unmet needs for information regarding psychological care for patients after stroke. They felt that since patients become more vulnerable to depression and anxiety after stroke, the care provided should not be limited to physical health and emphasized the need for healthcare professional's guidance in this aspect:

They just told us about the need for physical therapy, and they never cared about the psychological aspects of care and how to handle my father's depression. (C11)

When participants were asked about their preferred way of receiving information that can help them as caregivers, the majority expressed enthusiasm and willingness to participate in comprehensive training related to stroke and its management particularly if delivered by experts in the field or those who went through the same experience:

I wish there was hands-on training designed specifically for caregivers of stroke patients that could teach us about the disease and how to manage it. What are the complications that we should be aware of. I know we can access such information through the internet, but receiving it from experts in the field or those with similar experiences will make a huge difference. (C19)

In sum, the lack of support from healthcare professionals adversely affected participants’ psychological well-being and their performance as caregivers. They felt the need to talk about the problems they encountered while performing the tasks and struggled to locate necessary resources, such as rehabilitation services, home health care, or support groups, which was overwhelming.

Theme 3: Disrupted Daily Living and Social Isolation

This theme describes how caregiving demands have resulted in social isolation, disrupted daily routines and limited time for personal leisure and self-care. The family caregivers reported remarkable and drastic changes to their lives because of the time they spent caring for their loved ones. They felt like they lost their freedom to socialize or even spend time alone. Caregiving also prevented them from concentrating on other things and often took precedence over their work. The impact on relationships was also evident in the data. One participant spoke at length explaining how her role as a primary caregiver became a central focus, leaving little time for socializing and even described her experience as being a prisoner at her own house often leading to feelings of isolation:

I have not seen my daughter in 2 years now because she lives in a different city. I can’t travel to her like before. I want to help my husband and be around him all the time but at the same time I can’t attend many social gatherings. I feel isolated like a prisoner at my house. (C15)

Moreover, prolonged care caused declining health and decreased well-being of caregivers. Some reported limb and back pain due to excessive turning and moving patients whereas others developed chronic illness such high blood pressure due to worrying and anxiety:

I was diagnosed with hypertension because of how worried and stressed out. I was so preoccupied and worried thinking about my husband's condition. (C15)

The excessive worrying that accompanied caring for stroke patients caused trouble sleeping as well as weight changes:

I don’t sleep at night because most of the complications happened before were at night time. I feel like I am afraid to sleep. I gained 15 kg over the past year because I can never go out of the house. I don’t have a life anymore. It is all about taking care of my mother. (C11)

In addition to changes to participants’ health and daily living, making practical improvements in and around the home to ensure optimum safety and comfort for their ailing loved one was burdensome for some participants. Caregivers mentioned major alterations to their homes, such as constructing an elevator in their apartment building, placing electronic light switches, and installing home cameras resulting in an increased financial strain:

We are very afraid of him falling, so we changed the composition of the bathroom so that it is safe for him because in the past he fell more than once. We also installed an elevator in the house so that he can go up and down. I am more than happy to make all these changes but it is financially draining. (C10)

Adapting to the new situation and having total responsibility became a great challenge for family caregivers in general and spouses in specific. Female spouses described new household chores that they were never in charge of such as paying bills and fixing electrical problems in the house. One participant stated:

I never imagined I’d be the one handling all of this. He took care of the bills, the repairs, everything before. Now, I’m the one who must fix the broken light or deal with finances. It's overwhelming, and I feel like I’m constantly stepping into roles I wasn’t prepared for. It's not just about caring for him anymore—it's about managing everything else too, and it's a heavy burden. (C15)

Theme 4. Resilience Through Coping Mechanisms

This overarching theme illustrates the factors facilitating participants’ adaptability and resilience in coping with the demands of caregiving after a stroke. It involves three interrelated subthemes, namely: (a) Strength Through Faith, (b) Finding Meaning in Caregiving, and (c) The Power of Social Connections. Subthemes were identified through iterative coding and clustering of similar concepts emerging from participants’ narratives. Each subtheme represents specific coping resources utilized by caregivers, directly contributing to their resilience and emotional well-being.

Subtheme 4.1: Strength Through Faith

Faith and spiritual beliefs were raised by the family caregivers during the interviews as a profound source of strength, enabling them to adapt effectively to the caregiving role despite experiencing agonizing situations and incidents. Engaging in spiritual activities, such as praying, offered the caregivers a sense of purpose and hope that fueled their energy to keep going.

It was extremely sad and painful to see our mother in this condition. Having a strong faith and hope that Allah will never give us something that we cannot handle was the most grounding thought that helped us move forward. (C8)

In addition, spirituality served as a vital coping mechanism that enhanced the participants’ emotional resilience and mental well-being. Caregivers also viewed spiritual coping, faithfulness, and caring for one's parents as a way of welcoming many blessings and opportunities, which opened many doors in their lives.

Whenever I feel down or depressed, I Pray to God to help me and give me strength. And I always feel relieved afterwards. (C9)

I Feel like being my father's primary caregiver is a blessing from God. It opened many doors for me. I believe it is God's way of rewarding me. (C20)

Subtheme 4.2: Finding Meaning in Caregiving

Despite the challenges that caregivers often face, positive emotions also emerged from the data, offering a balanced perspective of caregivers’ experience. Participants described how caregiving resulted in strengthened relationships and family cohesion because caregiving tasks can bring the whole family together:

After his stroke, I felt much closer to him (Patient) I can’t imagine my life without him. It also helped in bringing the family together; I see my siblings more frequently now because we take turns in caregiving responsibilities. (C20)

Participants also perceived their caregiving role as an act of gratitude, loyalty and an opportunity to repay the love and the sacrifices that their loved ones have shown in the past. Their thoughts stem from gratitude and family loyalty that are deeply rooted in their cultural and religious beliefs. This was particularly evident among caregivers of ageing parents or spouses:

This is my father, so I will surely take care of him with gratitude and love … I know it is a huge responsibility but this is the least I can do for my father. This is our turn to pay him back. And I am sure that God will reward me in return. (C3)

My husband did everything for me, he took care of me. I have to be loyal to him. Gets emotional and starts to cry. (C15)

Participants also reflected on personal growth and developing resilience through caregiving experiences:

I have grown stronger emotionally. Caring for my mother taught me patience and compassion that I never knew I had. (C5)

This subtheme aligns with prior literature that emphasized the positive impacts of caregiving, particularly in reinforcing family bonds and fostering personal growth.

Subtheme 4.3: The Power of Social Connections

Social support from family members was reported by caregivers as a critical factor that motivates caregivers to navigate the challenges of caregiving. This support can come in different ways, such as emotional reassurance, help with caregiving tasks or allocation of community resources, all of which can alleviate the caregiving burden and provide the caregivers with the emotional and practical help needed, particularly through tough times.

My family are always there to support us. Sometimes they cook meals for us during the weekend and come to spend time with us or send their prayers during hard times. This makes me happy and gives me positive energy to continue caring for my husband. (C15)

My friends regularly checked on me, offering help whenever needed. Their consistent support truly lifted my spirits. (C18)

Although caregivers often lean on close family members for emotional support during difficult times, some participants advocated for community support in the form of support groups as more important than family support because they share the same experience and can validate their feelings:

I am grateful for my family presence, yet I wish there was a support group for caregivers of similar conditions who understand exactly what we are going through. I think their guidance and advice would be very helpful. (C13)

These findings corroborate existing studies highlighting community support as a critical factor in caregiver resilience and emotional well-being, validating their experiences and providing essential coping resources.

Discussion

This study explored the lived experiences of stroke survivors’ caregivers in Saudi Arabia, uncovering significant psychological, physical, social, and practical challenges while highlighting coping mechanisms. The findings of this study align with the global body of literature on the burden of informal caregiving for individuals with chronic illnesses but also add a unique cultural and social perspective that enhances our understanding of caregiving in the Saudi context that add depth to the discussion.

Participants reported overwhelming psychological stress stemming from role transitions, financial burdens, and the unpredictable nature of stroke recovery. These findings resonate with global findings reported by Harcourt et al. (2024) in a systematic scoping review on stroke informal caregiving and are reinforced by a recent qualitative study conducted by Alselami et al. (2024) in Saudi Arabia, both of which emphasize emotional exhaustion, anxiety, and depressive symptoms among caregivers. The current study builds on this by contextualizing emotional distress within the traditional family structures prevalent in Saudi society, where caregiving is often viewed as a familial obligation and is primarily shouldered by close family members. This role expectation further amplifies caregivers’ emotional distress, particularly among primary caregivers, who reported higher levels of burden when compared to shared caregivers. Participants who assumed the full caregiving role without assistance described greater emotional isolation and disruption to personal and professional life. This observation is in line with findings by Bekele et al. (2023), who noted that the level of caregiver involvement significantly shapes emotional outcomes, with primary caregivers reporting more psychological strain than those sharing responsibilities. In the present study, this was especially evident among those who were forced to give up careers or personal aspirations, expressing deep feelings of identity loss and emotional fatigue.

Navigating the healthcare system emerged as a significant source of frustration for caregivers. Caregivers expressed dissatisfaction with the fragmented care, poor communication and the lack of support from healthcare professionals. These experiences are not unique to Saudi Arabia and mirror findings from both Western and non-Western settings indicating that caregivers frequently encounter disjointed service and insufficient support, making it difficult to coordinate care (Garnett et al., 2022; Lobo et al., 2023; Sexton et al., 2022; Tziaka et al., 2024). Furthermore, low health literacy and a lack of comprehensive training to handle the complexity of poststroke care added to the caregiving challenge and further impeded timely care, leaving caregivers feeling underprepared and overwhelmed. Hence, participants in this study expressed strong interest in caregiver-specific training programs, echoing the success of similar interventions globally (Cheng et al., 2018; Quinn et al., 2023). Integrating such programs into the Saudi healthcare system while accommodating cultural preferences and local resources could significantly enhance caregiver preparedness and self-efficacy.

Social isolation and lifestyle disruption were also prominent themes describing caregivers’ experiences poststroke. Many participants prioritized caregiving at the expense of their social lives and personal well-being, a phenomenon supported by broader literature (Jaracz et al., 2024; Li et al., 2021). Yet, this study uniquely highlights how Saudi cultural expectations, especially the strong emphasis on fulfilling extended familial and social roles, can intensify feelings of guilt and personal inadequacy, particularly among female caregivers.

Financial stressors were frequently mentioned, with the cost of rehabilitation, medications, and home modifications creating a substantial burden on families. These finding are consistent with other studies from both high-income and low-resource settings (Garnett et al., 2022; Persson et al., 2017; Tziaka et al., 2024), but the reliance on family-based care and the lack of subsidized home healthcare in Saudi Arabia may exacerbate these financial pressures. These insights suggest a pressing need for financial assistance programs, caregiver subsidies, and policy-level interventions to ease the economic burden of caregiving.

Despite these challenges, several participants also identified positive outcomes from their caregiving role, including stronger family relationships and personal growth. This mirrors findings from recent studies in non-Western settings, which have begun to highlight the positive psychological impacts of caregiving. For example, a study conducted in India (Mishra et al., 2023) reported that caregiving fostered personal growth, the development of new skills, and a deepened sense of gratitude and fulfillment among caregivers of older adults. Similarly, research from Singapore (Yuan et al., 2023) identified culturally specific positive themes such as enhanced self-care awareness. These findings align with our results, suggesting that caregiving, despite its burdens, can also reinforce family bonds and promote emotional resilience. In the present study, participants noted that the caregiving experience, although emotionally and physically taxing, led to a greater appreciation of their loved one's presence and brought families closer together. This duality offers a counter-narrative to the predominantly negative framing of caregiving and highlights the complexity of the caregiving role. The interplay between burden and meaning underscores the multifaceted nature of caregiving, particularly in collectivist cultures where moral and spiritual values are closely tied to family duty.

Faith and spirituality also emerged as powerful sources of resilience for caregivers, consistent with the central role of religion and faith in Saudi culture. Participants drew strength from faith and spirituality. Religious practices such as prayer and Quran recitation offered emotional resilience, a sense of purpose, and spiritual framing of caregiving as a moral and religious duty. These findings align with research from other Muslim-majority contexts (Ismail et al., 2024; Mirhosseini et al., 2024), highlighting the universal role of spirituality as a coping mechanism within Islamic contexts.

Moreover, while family and social support networks played an essential role in mitigating caregiver stress, participants voiced a strong need for community-based support groups. These would offer peer support, shared experiences, and culturally relevant resources, all of which are elements shown to be effective in various contexts (Chow et al., 2021; Daynes-Kearney & Gallagher, 2023). Developing such networks in Saudi Arabia could reduce social isolation, foster resilience, and enhance the overall caregiving experience

Overall, this study contributes to a growing yet still limited body of research on stroke caregiving in non-Western settings. By focusing on caregiver perspectives within Saudi Arabia's unique cultural, religious, and healthcare framework, it provides critical insights into the caregiving burden and identifies actionable points for intervention. These findings highlight the need for more inclusive global research agendas and locally tailored support mechanisms that recognize cultural values while addressing practical and emotional caregiver needs.

Strengths and Limitations

This is one of the first qualitative studies exploring the lived experiences of stroke survivors’ caregivers in Saudi Arabia, addressing an essential gap in culturally specific caregiving literature. Recruiting participants from multiple healthcare settings provided diverse perspectives, thereby enriching the depth and relevance of the findings. Additionally, employing a descriptive qualitative design facilitated the detailed exploration of caregivers’ experiences, enabling a thorough understanding of their perceptions and caregiving needs, which accomplishes the aim of the study. Nevertheless, several limitations should be noted. The translation of interview data from Arabic to English carries a potential risk of meaning loss, although the rigorous backward translation process enhanced the trustworthiness of the findings. Furthermore, participant recruitment was confined to a limited geographical area, potentially limiting the transferability of the insights to caregivers in other regions within Saudi Arabia.

Implications for Practice

This study offers important implications for policies and practices aimed at supporting caregivers of stroke survivors in Saudi Arabia. While family caregiving is a culturally embedded norm, existing healthcare and social support systems are not adequately structured to meet caregivers evolving needs. Targeted changes are required to alleviate caregiver burden and enhance outcomes for both caregivers and patients.

First, healthcare systems must prioritize caregiver education and involvement in care planning. Structured education programs specific to stroke care can enhance caregivers’ competence and confidence. Healthcare professionals should integrate comprehensive training sessions, including hands-on workshops and accessible online resources. Expanding these services to include virtual caregiver training, consultations, and support groups through telehealth platforms, which are increasingly adopted in Saudi Arabia, can improve accessibility for caregivers, particularly for caregivers in rural or underserved areas.

Second, establishing community-based caregiver support systems could provide emotional support, practical advice, and a safe space for caregivers to share experiences. Policymakers should establish formal caregiver support groups within community healthcare centers. Collaboration between healthcare providers, social service organizations, and religious institutions would help normalize participation and reduce stigma. Religious institutions, given their cultural importance, could play a central role in hosting or endorsing such groups.

Third, Saudi Arabia's culture strongly emphasizes family caregiving, often assigning this role to women. Therefore, cultural expectations and gender roles should be addressed through policy to support women in caregiving roles. Supportive measures such as paid family leave, flexible work arrangements, and financial allowances would help female caregivers balance caregiving with employment, reducing economic and emotional strain (Panzeri et al., 2019).

Finally, there is a need for a national caregiving strategy that integrates caregiver education, mental health services, financial support, and community-based resources. Such an initiative can draw from the successful caregiving models like the United Kingdom's Carers’ Strategy to develop a culturally adapted, comprehensive plan to support caregivers across diverse settings and needs.

Conclusions

This study contributes to the growing understanding of the experiences of caregivers of stroke survivors in Saudi Arabia. While the findings are aligned with global literature, they also reveal culturally specific challenges and coping mechanisms unique to Saudi caregivers. Addressing these unmet needs requires culturally sensitive interventions and systemic changes to healthcare and social support systems. Practical measures, such as structured caregiver education programs, community-based support groups, and flexible work policies for caregivers, should be prioritized to alleviate caregiver burdens. Additionally, future research should focus on exploring the long-term outcomes of caregiving on family dynamics and caregivers’ health, further informing effective policies and targeted interventions. By implementing these actionable recommendations, stakeholders can enhance caregiver well-being and improve overall healthcare outcomes for stroke survivors in Saudi Arabia.

Supplemental Material

sj-docx-1-son-10.1177_23779608251354903 - Supplemental material for An Exploration of the Experiences of Informal Caregivers of Stroke Patients in Saudi Arabia; A Qualitative Study

Supplemental material, sj-docx-1-son-10.1177_23779608251354903 for An Exploration of the Experiences of Informal Caregivers of Stroke Patients in Saudi Arabia; A Qualitative Study by Afnan Yousef Tunsi, Anwar Tammar, Jood Wahbah, Fatimah Al-Marhoon, Jomana Al-Mashjary, Marym Alaamri, Aisha Alhofaian and Ruba Alharazi in SAGE Open Nursing

Supplemental Material

sj-docx-2-son-10.1177_23779608251354903 - Supplemental material for An Exploration of the Experiences of Informal Caregivers of Stroke Patients in Saudi Arabia; A Qualitative Study

Supplemental material, sj-docx-2-son-10.1177_23779608251354903 for An Exploration of the Experiences of Informal Caregivers of Stroke Patients in Saudi Arabia; A Qualitative Study by Afnan Yousef Tunsi, Anwar Tammar, Jood Wahbah, Fatimah Al-Marhoon, Jomana Al-Mashjary, Marym Alaamri, Aisha Alhofaian and Ruba Alharazi in SAGE Open Nursing

Supplemental Material

sj-docx-3-son-10.1177_23779608251354903 - Supplemental material for An Exploration of the Experiences of Informal Caregivers of Stroke Patients in Saudi Arabia; A Qualitative Study

Supplemental material, sj-docx-3-son-10.1177_23779608251354903 for An Exploration of the Experiences of Informal Caregivers of Stroke Patients in Saudi Arabia; A Qualitative Study by Afnan Yousef Tunsi, Anwar Tammar, Jood Wahbah, Fatimah Al-Marhoon, Jomana Al-Mashjary, Marym Alaamri, Aisha Alhofaian and Ruba Alharazi in SAGE Open Nursing

Footnotes

Acknowledgements

The authors would like to express their sincere gratitude to all the participants who generously shared their time and experiences.

ORCID iDs

Afnan Yousef Tunsi

Ruba Alharazi

Ethical Considerations

Ethical approval was granted from the Nursing Research Ethical Committee of the Faculty of Nursing at King Abdulaziz University in Jeddah (Ref No. 2B.05) and ethics committees at both recruitment hospitals for conducting the research prior to initiating study procedures. Written informed consent was obtained from study participants before conducting the interviews.

Consent for Publication

Written consent was obtained from participants to publish the study findings and all sensitive information was anonymized.

Author Contributions

AYT: conceptualization, data collection, data analysis, and writing and reviewing the manuscript; AT: conceptualization, data collection, data analysis, and writing the manuscript; JW: conceptualization, data collection, data analysis, and writing the manuscript; FA: conceptualization, data collection, data analysis, and writing the manuscript; JA: conceptualization, data collection, data analysis, and writing the manuscript; MA: conceptualization, and writing and reviewing the manuscript; AA: conceptualization, and writing and reviewing the manuscript; RA: conceptualization, and writing and reviewing the manuscript.

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

The datasets generated and/or analyzed during the current study are not publicly available due to their containing information that could compromise the privacy of research participants, but are available from the corresponding author on reasonable request.

Supplemental Material

Supplemental material for this article is available online.

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Supplementary Material

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An Exploration of the Experiences of Informal Caregivers of Stroke Patients in Saudi Arabia;A Qualitative Study

Abstract

Introduction

Objectives

Method

Results

Conclusion

Keywords

Introduction

Review of Literature

Method

Design

Sample and Setting

Inclusion and Exclusion Criteria

Data Collection

Data Analysis

Ethical Considerations

Rigor

Results

Theme 1: Emotional and Psychological Strain

Theme 2: Barriers to Navigating Healthcare Systems

Theme 3: Disrupted Daily Living and Social Isolation

Theme 4. Resilience Through Coping Mechanisms

Subtheme 4.1: Strength Through Faith

Subtheme 4.2: Finding Meaning in Caregiving

Subtheme 4.3: The Power of Social Connections

Discussion

Strengths and Limitations

Implications for Practice

Conclusions

Supplemental Material

sj-docx-1-son-10.1177_23779608251354903 - Supplemental material for An Exploration of the Experiences of Informal Caregivers of Stroke Patients in Saudi Arabia; A Qualitative Study

Supplemental Material

sj-docx-2-son-10.1177_23779608251354903 - Supplemental material for An Exploration of the Experiences of Informal Caregivers of Stroke Patients in Saudi Arabia; A Qualitative Study

Supplemental Material

sj-docx-3-son-10.1177_23779608251354903 - Supplemental material for An Exploration of the Experiences of Informal Caregivers of Stroke Patients in Saudi Arabia; A Qualitative Study

Footnotes

Acknowledgements

ORCID iDs

Ethical Considerations

Consent for Publication

Author Contributions

Funding

Declaration of Conflicting Interests

Data Availability Statement

Supplemental Material

References

Supplementary Material