Abstract
Aim
Neurological conditions often result in long-term care needs, placing family caregivers at the centre of patients’ recovery and ongoing care. Although quantitative studies have identified substantial caregiver burden, the lived experiences underlying this burden remain insufficiently understood. This study aimed to explore the lived experiences of caregiver burden among primary caregivers of patients with neurological conditions and synthesise qualitative evidence to inform nursing practice and supportive interventions.
Methods
We conducted a qualitative meta-synthesis to explore the experiences of informal caregivers of patients with neurological conditions. PubMed, CINAHL, Embase, Cochrane Library, SinoMed, and Web of Science were searched from inception to 1 April 2026. The methodological quality of included studies was assessed using the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Qualitative Research (JBI, 2020). Two reviewers independently conducted study screening, quality appraisal, and data extraction, with disagreements resolved through discussion or consultation with a third reviewer. Data were synthesised thematically following the three-stage approach of Thomas and Harden (2008), involving line-by-line coding of the findings, development of descriptive themes, and generation of analytical themes.
Results
A total of 26 qualitative studies were included. Five overarching themes emerged from caregivers’ experiences: (i) Physical and psychological burden, including health deterioration and emotional distress; (ii) economic burden and social restrictions, including employment loss and social isolation; (iii) role conflict and loss of self, characterised by entrapment in the caregiving role and the loss of pre-existing identity; (iv) inadequate support, involving insufficient social support, limited access to information, and poorly timed professional interventions; (v) cultural obligations and self-sacrifice, reflecting filial piety, marital responsibilities, self-reliance, and neglecting personal health.
Conclusions
This meta-synthesis demonstrates that primary caregivers of patients with neurological conditions experience multidimensional and culturally embedded burdens. The findings highlight the importance of timely professional support, improved access to information resources, and opportunities for emotional expression. Moreover, structured discharge education and flexible respite care services may help alleviate caregiver burden. Future studies examining the cultural dimensions of caregiving and the evolving nature of caregiver burden over time may provide further insights into the development of targeted interventions.
Keywords: Caregiver burden, Neurological conditions, Family caregiver, Meta‑synthesis, Qualitative research, Lived experience
Introduction
Neurological conditions—including traumatic brain injury, brain tumours, and cerebrovascular diseases—often result in varying degrees of motor, cognitive, behavioural, and emotional dysfunctions [1–3]. These conditions are typically characterised by acute onset, prolonged clinical courses, and uncertain prognoses, which frequently leave patients with long-term care needs following the acute phase of illness [4, 5]. Consequently, family caregivers become the primary source of support throughout the rehabilitation process [6]. Caregivers are often required to undertake multiple responsibilities, including assisting with activities of daily living, coordinating medical care, providing emotional support, and participating in clinical decision-making [6]. Collectively, these responsibilities contribute to substantial caregiving burdens [7, 8].
Existing research has demonstrated that caregiver burden in the neurological conditions is a multidimensional construct encompassing physical, psychological, social, and economic domains [9]. A cross-sectional study involving caregivers of patients with neurological conditions reported that approximately 50% of caregivers experienced a moderate-to-severe burden [10]. Furthermore, caregiver burden has been found to be positively associated with the severity of the patient’s functional impairment [11]. Prolonged caregiving burden not only adversely affects caregivers’ health by increasing the risk of conditions such as hypertension, anxiety, and depression, but may also compromise the quality of care provided and contribute to higher hospital readmission rates among patients [12].
Although international guidelines and national nursing policies emphasise the importance of identifying caregivers’ needs and providing appropriate support [6], evidence suggests that these issues remain insufficiently addressed in both clinical practice and research settings [13]. A systematic review in the field of neurological conditions reported that caregiver-related outcomes, such as burden and supportive care needs, are often underreported and inconsistently measured in empirical studies. This lack of attention may contribute to persistent unmet caregiver needs. For instance, Aoun et al. [9] found that family caregivers of patients with brain tumours experience greater caregiving burden, psychological distress, and workload than caregivers of patients with other patient groups. Moreover, caregivers’ physical health progressively deteriorates over time.
To date, much of the existing research on caregiver burden among individuals with neurological conditions has relied on quantitative, cross-sectional survey designs [14, 15]. Although such studies are useful for identifying associated factors and estimating overall levels of burden, they provide limited insight into caregivers‘ lived experiences, emotional transitions, and coping strategies throughout the caregiving process. Conversely, qualitative studies are better suited to capture caregivers’ subjective perspectives and provide detailed accounts of their daily challenges, stressors, and unmet needs. Recently, a growing number of qualitative studies examining the experiences of primary caregivers of patients with neurological conditions have been conducted across different countries and cultural contexts [16–19]. However, existing evidence remains fragmented and has not yet been systematically synthesised.
Aim
This study aimed to conduct a meta-synthesis of qualitative studies exploring the caregiving burden experiences of primary caregivers of patients with neurological conditions. Specifically, this study sought to systematically synthesise caregivers’ lived experiences of burden, identify the core dimensions of caregiving burden, and examine the cultural, social, and healthcare-system-related factors influencing these experiences. These findings may provide evidence-based guidance for clinical nursing professionals to develop targeted support strategies for caregivers.
Registration
The details of the protocol for this review were registered in PROSPERO(registration number CRD420261351829).
Methods
Study design
This study was conducted as a qualitative meta-synthesis of qualitative research exploring the caregiving experiences of individuals caring for patients with neurological conditions. Thematic synthesis, following the approach described by Thomas and Harden (2008), was used as the analytical method to synthesise findings from the included studies [20].
Reporting guidelines
This review was reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA 2020) statement and the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines. The PRISMA flow diagram was used to document the study selection process.
Search strategy
A systematic literature search was conducted in PubMed, CINAHL, Embase, the Cochrane Library, SinoMed, and Web of Science from database inception to 1 April 2026.
The search strategy was developed using Medical Subject Headings (MeSH) terms and free-text keywords based on the Population–Concept–Context (PCC) framework proposed by Peters et al. (2020). The population was defined as primary informal caregivers. The concept focused on caregiver burden and caregiving experiences. The context included neurological conditions such as stroke, traumatic brain injury, and brain tumours.
Search terms were adapted for each database and combined using Boolean operators (“AND” and “OR”). No methodological filters were applied to ensure comprehensive retrieval of relevant qualitative studies. The complete search strategy is presented using PubMed as an example (Table 1). In addition, the reference lists of all included studies and relevant reviews were searched to identify additional eligible studies.
Table 1.
Search strategies (PubMed)
| 1 | caregiver[Title/Abstract] OR caregivers[Title/Abstract] OR caregiving[Title/Abstract] OR family[Title/Abstract] |
| 2 | Caregivers[MeSH] OR Family[MeSH] |
| 3 | #1 OR #2 |
| 4 | stroke[Title] OR “brain injury“[Title] OR “brain tumour“[Title] OR “brain tumor“[Title] OR neurosurgery[Title] OR neurological[Title] OR tbi[Title] |
| 5 | Neurosurgical Procedures[MeSH] OR Brain Diseases[MeSH] OR Brain Neoplasms[MeSH] OR Cerebrovascular Disorders[MeSH] OR Stroke[MeSH] |
| 6 | #4 OR #5 |
| 7 | qualitative[Title] OR phenomenology[Title] OR interview[Title] OR experiences[Title] |
| 8 | Qualitative Research[MeSH] |
| 9 | #7 OR #8 |
| 10 | burden[Title/Abstract] OR “caregiver burden“[Title/Abstract] OR stress[Title/Abstract] OR anxiety[Title/Abstract] |
| 11 | Caregiver Burden[MeSH] OR Stress, Psychological[MeSH] OR Anxiety[MeSH] |
| 12 | #10 OR #11 |
| 13 | #3 AND #6 AND #9 AND #12 |
Eligibility criteria
Studies were included if they met the following criteria:
Qualitative studies or mixed-methods studies in which qualitative findings could be clearly identified and extracted;
Studies exploring the experiences of primary informal caregivers of adult patients aged ≥18 years with neurological conditions;
Studies reporting qualitative findings related to caregiver burden, lived experiences, perceptions, or coping strategies.
Neurological conditions were defined as disorders affecting the central or peripheral nervous system. Eligible conditions included, but were not limited to, stroke, traumatic brain injury, brain tumours, cerebrovascular diseases, and spinal cord injury.
Studies were included regardless of whether patients had undergone surgical intervention, as neurological conditions are often managed through medical or rehabilitative pathways.
Exclusion criteria included studies involving non-caregiver populations, quantitative-only studies, mixed-methods studies where qualitative findings could not be extracted and analysed separately, non-English publications, and conference abstracts or grey literature.
Study selection
The search strategy was initially implemented in 1 April 2026. A total of 3,146 records were identified through database searches. After removing duplicates using EndNote 2025, 2,851 records remained for screening. During title and abstract screening, 2,772 records were excluded due to irrelevance to the research question, leaving 79 reports for full-text retrieval. Of these, 34 full-text articles were excluded due to inaccessibility of full texts (n = 23) or because they were not primary research studies (n = 11). The remaining 45 full-text articles were assessed against the eligibility criteria. Following full-text review, 19 studies were excluded for failing to meet the inclusion criteria, resulting in 26 studies included in the meta-synthesis.The study selection process is presented in the PRISMA flow diagram (Fig. 1).
Fig. 1.
PRISMA flowchart
Quality appraisal
The methodological quality of included studies was independently assessed by two reviewers using the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Qualitative Research (JBI, 2020). This tool assesses methodological congruity across ten domains, including philosophical perspective, research methodology, data collection, analysis, representation of participants’ voices, ethical considerations, and interpretation of findings. Each study was assessed item by item, with responses recorded as “yes,” “no,” “unclear,” or “not applicable” in accordance with the JBI checklist. No study was excluded based on methodological quality. Instead, the appraisal results were used to inform the interpretation and discussion of the synthesis findings, enhancing analytical rigour and transparency. Disagreements between reviewers were resolved through discussion with a third reviewer. The results of the quality appraisal are presented in Table 2.
Table 2.
Results of quality appraisal
| Studies | ① | ② | ③ | ④ | ⑤ | ⑥ | ⑦ | ⑧ | ⑨ | ⑩ |
|---|---|---|---|---|---|---|---|---|---|---|
| Malewezi et al. [21] | U | Y | Y | Y | Y | N | N | Y | Y | Y |
| Lond. et al. [22] | Y | Y | Y | Y | Y | N | U | Y | Y | Y |
| Bastawrous et al. [23] | U | Y | Y | Y | Y | N | U | Y | Y | Y |
| Aviles et al. [18] | Y | Y | Y | Y | Y | Y | Y | U | Y | Y |
| Selasi et al. [24] | Y | Y | Y | Y | Y | N | U | Y | Y | Y |
| Sajwani-Merchant et al. [25] | Y | Y | Y | Y | Y | N | U | U | Y | Y |
| López-Espuela et al. [26] | Y | Y | Y | Y | Y | U | Y | Y | Y | Y |
| Ma et al. [16] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Tastan et al. [27] | Y | Y | Y | Y | Y | U | Y | Y | Y | Y |
| Yang et al. [28] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Mbakile-Mahlanza et al. [19] | Y | Y | Y | Y | Y | Y | U | Y | Y | Y |
| Sherwood et al. [29] | Y | Y | Y | Y | Y | N | U | U | Y | Y |
| Woodford et al. [30] | Y | Y | Y | Y | Y | U | Y | U | Y | Y |
| Harcourt et al. [14] | Y | Y | Y | Y | Y | Y | Y | U | Y | Y |
| Zanotto et al. [31] | Y | Y | Y | Y | Y | U | Y | U | Y | Y |
| Wallengren et al. [32] | Y | Y | Y | Y | Y | U | Y | Y | Y | Y |
| Zhang et al. [33] | Y | Y | Y | Y | Y | Y | Y | U | Y | Y |
| Ertuğrul et al. [34] | U | Y | Y | Y | Y | U | Y | U | Y | Y |
| Tyagi et al. [35] | Y | Y | Y | Y | Y | U | Y | Y | Y | Y |
| Rodriguez et al. [36] | Y | Y | Y | Y | Y | U | Y | U | Y | Y |
| Francis. et al. [37] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Zarzycki et al. [38] | Y | Y | Y | Y | Y | Y | Y | U | Y | Y |
| Qiu et al. [39] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Denham et al. [40] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Vogelsang et al. [41] | Y | Y | Y | Y | Y | Y | Y | U | Y | Y |
| Cecil et al. [42] | U | Y | Y | Y | Y | U | Y | Y | Y | Y |
# Question
1 Is there congruity between the stated philosophical perspective and the research methodology? (Y/N/U)
2 Is there congruity between the research methodology and the research question or objectives? (Y/N/U)
3 Is there congruity between the research methodology and the methods used to collect data? (Y/N/U)
4 Is there congruity between the research methodology and the representation and analysis of data? (Y/N/U)
5 Is there congruity between the research methodology and the interpretation of results? (Y/N/U)
6 Is there a statement locating the researcher culturally or theoretically? (Y/N/U)
7 Is the influence of the researcher on the research, and vice versa, addressed? (Y/N/U)
8 Are participants and their voices adequately represented? (Y/N/U)
9 Is the research ethical according to current criteria, and for recent studies, is there evidence of ethical approval by an appropriate body? (Y/N/U)
10 Do the conclusions drawn in the research report flow from the analysis or interpretation of the data? (Y/N/U)
Answer key: Y = Yes, N = No, U = Unsure
Data extraction
Data extraction was independently performed by two reviewers using a standardised Excel form. Extracted data included author, year, country, study design, participant characteristics, patient population, and key qualitative findings related to caregiver burden. Participant identifiers were standardised across studies using a consistent coding format, and all extracted data were cross-checked between two reviewers to ensure accuracy and consistency. Any discrepancies were resolved through discussion and consensus. A total of 26 studies were included in the meta-synthesis, involving 507 caregivers across all included studies. The characteristics of the included studies are summarised in Table 3.
Table 3.
Basic characteristics of the included literature
| Study | Country | Study design | Sample size | Phenomenon of interest | Main findings |
|---|---|---|---|---|---|
| Malewezi et al. [21] | UK | Semi-structured interviews | 16 | Caregiving experiences of stroke survivors’ family caregivers. | Six themes: Physical effects, emotional effects, socio-economic effects, lack of respite support, lack of information, and lack of support. |
| Lond. et al. [22] | UK | Qualitative study | 8 | Long-term caregiving experiences of partners with acquired brain injury, including psychological adjustment, grief processes and coping mechanisms | Three themes: Transition from denial to acceptance; ambiguous loss; becoming an expert carer. |
| Bastawrous et al. [23] | Canada | Qualitative descriptive (semi-structured interviews) | 23 | Role overload in adult daughters caring for post-stroke patients while holding multiple roles (such as mother, partner, and employee) and their coping responses. | Two themes: Impact on relationships; restriction of valued activities. |
| Aviles et al. [18] | Philippines | Interpretative phenomenological analysis, semi-structured in-depth interviews | 5 | Lived experiences of stroke caregivers in Guadalupe, Cebu City, Philippines, including role changes, coping styles and burdens. | Three themes: Altruism of caregiving: Of self and family; caregiving victories; caregiving burdens. |
| Selasi et al. [24] | Ghana | Phenomenology, semi-structured interviews | 37 | Lived experiences of family caregivers of cerebrovascular accident survivors in Ghana, including knowledge, preparedness, impact of caregiving, and coping strategies. | Four themes: Lack of preparedness; barriers confronted by caregivers; caregiving cost; inadequate coping strategies, and poor knowledge. |
| Sajwani-Merchant et al. [25] | USA | Phenomenology, semi-structured interviews | 10 | Real experiences of social support received by stroke caregivers during caregiving, including stressors, coping strategies, and the role of social support. | Two themes: Response to stroke; stress and coping |
| López-Espuela et al. [26] | Spain | Interpretative phenomenological analysis, semi-structured in-depth interviews | 18 | The experiences, needs and adaptation process of spouse caregivers of stroke survivors, focusing on caregiver burden, life disruption, and changes in the couple relationship. | Three themes: “Caregiving and that’s all”; “Breaking the couple’s life together”; “Going through the (non) loss alone.” |
| Ma et al. [16] | China | Qualitative descriptive study (face-to-face semi-structured interviews) | 21 | Real experiences of family caregivers of patients with traumatic brain injury during hospitalisation in western China, including challenges and needs of caregivers. | Three themes: TBI consequences in patients, challenges of caregivers, and needs of caregivers. |
| Tastan et al. [27] | Turkey | Qualitative descriptive study (phenomenology and semi-structured interviews) | 10 | Experiences of relatives of patients undergoing cranial surgery for brain tumours during the perioperative and home-care periods. |
Three categories and eight themes were identified: 1. Personal feelings: first reactions (shock, fear of death); decision for surgery (helplessness or acceptance); first meeting with the patient after surgery (happiness or fear); ambiguity (anxiety). 2. Management of the changes: management of the side effects of the tumour (difficulty in walking, eating); management of role and behavioural changes (apathy, aggression); management of care at home (side effects of radiotherapy, nausea, anorexia, weight loss); social support (family members supporting each other). 3. Need for knowledge about disease process management: insufficient information (lack of knowledge about surgery, complications, and patient care). |
| Yang et al. [28] | China | Qualitative descriptive study (face-to-face semi-structured interviews) | 19 | Caregiving experiences, emotional states, and unmet needs of primary caregivers of elderly stroke patients in China, using Maslow’s Hierarchy of Needs as a theoretical framework. | Three themes were identified: Caregiving challenges and multiple stresses; caregiving growth and positive change; and diverse supportive care needs. |
| Mbakile-Mahlanza et al. [19] | Botswana | Qualitative component of a mixed-methods study (semi-structured interviews) | 18 | Experiences of family caregivers of individuals with traumatic brain injury in Botswana, including lack of information, caregiving demands, emotional distress, social isolation, financial burden, and cultural coping resources. |
Seven themes were identified: 1. Lack of information 2. Heavy demands on caregivers 3. Emotional distress 4. Social isolation and lack of community support 5. Financial burden 6. Family devotion 7. Faith in God |
| Sherwood et al. [29] | USA | Qualitative content analysis (open-ended responses from self-report questionnaires) | 43 | Positive and negative caregiving experiences among caregivers of individuals with a primary malignant brain tumour, including the work of caring, support, information, symptom management, and end of life. |
Six themes were identified: 1. The work of caring 2. Informal support 3. Formal support 4. Obtaining information 5. Symptom management 6. End of life |
| Woodford et al. [30] | UK | Qualitative study (semi-structured interviews, thematic analysis) | 19 | Difficulties experienced by informal caregivers of stroke survivors with elevated symptoms of depression and anxiety. |
Three themes were identified: 1. Difficulties adapting to the caregiving role 2. Uncertainty 3. Lack of support |
| Harcourt et al. [14] | UK | Exploratory qualitative study (semi-structured interviews, template analysis) | 18 | The process of self-identification (how and when someone sees themselves as a carer), preferences for care-related language, and experiences of support among informal caregivers after stroke. |
Five themes were identified: 1. Adopting and adjusting to the care role 2. Accessibility of support 3. Perceptions of support 4. Acceptability of care-related language 5. Function of care-related language |
| Zanotto et al. [31] | UK | Interpretative Phenomenological Analysis (in-depth interviews) | 10 | Lived experiences of informal caregivers of individuals with a brain tumour in terms of coping, support needs, and changes in relationships. |
Five themes were identified: 1. Exhaustion and all-consuming role 2. Experiencing rupture and loss 3. Togetherness and isolation 4. Navigating healthcare and lack of support 5. Anticipating grief |
| Wallengren et al. [32] | Sweden | Phenomenological hermeneutic method (semi-structured open-ended interviews) | 16 | Transition from being just a relative to gradually becoming a relative to a stroke victim from the time of the stroke event and the first weeks on. |
Two main themes were identified: 1. Being in chaos 2. Searching for order in chaos |
| Zhang et al. [33] | China | Hermeneutic phenomenology (in-depth interviews) | 5 | Lived caregiving experiences of Chinese family caregivers of stroke survivors. |
Five themes were identified: 1. Caregiving as suffering 2. Caregiving as an obligation 3. Caregiving as a personal choice 4. Caregiving as a meaningful opportunity 5. Caregiving as a natural part of living |
| Ertuğrul et al. [34] | Turkey | Qualitative descriptive study (face-to-face semi-structured interviews, inductive content analysis) | 12 | Experiences and needs of family caregivers of stroke patients who require physical restraints. |
Three themes were identified: 1. The reason for using PR 2. The turmoil of having to use PR 3. Unmet needs and suggestions |
| Tyagi et al. [35] | Singapore | Qualitative descriptive study (semi-structured interviews, thematic analysis) | 61 | Heterogeneity in caregiving experiences of stroke survivors and their family caregivers across different caregiver identities (spouse, and adult-child) in an Asian setting. |
Five themes were identified: 1. Caregiver reserve 2. Coping strategies 3. Caregiver burden 4. Competing commitments 5. Role of foreign domestic worker |
| Rodriguez et al. [36] | Spain | Qualitative phenomenological study (semi-structured interviews, Colaizzi method) | 25 | Struggles, needs, and metamorphosis of family caregivers of people with spinal cord injury during the rehabilitation period. |
Three themes were identified: 1. Metamorphosis of the caregiver 2. Needs of caregivers 3. Facilitators and barriers in metamorphosis |
| Francis. et al. [37] | Denmark | Hermeneutical qualitative study (semi-structured in-depth interviews, two longitudinal interviews) | 10 | Experiences of suffering among spouse caregivers of partners with brain tumours. |
Three themes were identified: 1. Enduring everyday life 2. Being overlooked and hurting 3. Being acknowledged and feeling good |
| Zarzycki et al. [38] | UK | Interpretative phenomenological analysis (semi-structured interviews) | 8 | Everyday caregiving experiences of informal caregivers of people with acquired brain injury, including illness perceptions, caregiving challenges, and changes in sense of self. |
Three themes were identified: 1. Making sense of brain injury 2. Consumed by caregiving 3. Changing self |
| Qiu et al. [39] | China | Qualitative descriptive study (semi-structured in-depth interviews, content analysis) | 25 | Influence of Chinese culture on the experiences of family caregivers of stroke survivors, including caregiving role perception, coping strategies, and self-sacrifice. |
Three themes were identified: 1. Caregiving role perception 2. Coping strategies 3. Self-sacrifice |
| Denham et al. [40] | Australia | Qualitative study (semi-structured telephone interviews, inductive thematic analysis) | 24 | Unmet needs and support preferences of stroke caregivers. |
Four themes were identified: 1. Social relationships and support 2. Obtaining adequate information 3. Taking care of oneself 4. Service accessibility |
| Vogelsang et al. [41] | Sweden | Qualitative descriptive study (semi-structured interviews, inductive content analysis) | 16 | Experiences of informal caregivers of individuals affected by aneurysmal subarachnoid haemorrhage |
Four categories were identified: 1. Impact on close relationships 2. Impact on everyday life 3. Emotional and informational support 4. Expectations on recovery |
| Cecil et al. [42] | UK | Qualitative descriptive study (semi-structured interviews) | 30 | Caring and coping experiences among caregivers of stroke survivors in the community. |
Three categories were identified: 1. Impact of the stroke event on the caregiver 2. Extrinsic factors that support the caring scenario 3. Intrinsic factors that help a carer to cope |
Data synthesis
The data synthesis was carried out using thematic synthesis, following the approach proposed by Thomas and Harden (2008). This approach was chosen to systematically integrate the findings from qualitative studies. The process consisted of three sequential stages: line-by-line coding, development of descriptive themes, and generation of analytical themes.
Stage 1: Line-by-line coding
Two authors independently coded the extracted qualitative findings line by line to generate initial descriptive codes. Coding was conducted manually using Microsoft Word and Microsoft Excel to facilitate systematic organisation of data, consistent with approaches used in previous qualitative evidence syntheses [17]. No qualitative data analysis software (e.g., NVivo) was used. Coding was inductive and data-driven, without the use of a pre-existing framework. Any discrepancies between the two coders were resolved through discussion and, when necessary, consultation with a third reviewer until consensus was reached.
Stage 2: Development of descriptive themes
The initial codes were compared, grouped, and iteratively refined through team discussions to develop descriptive themes reflecting shared meanings across studies.
Stage 3: Generation of analytical themes
Descriptive themes were further interpreted and synthesised into five overarching analytical themes that capture higher-order patterns of caregiver burden (Table 4), which were agreed upon through iterative team consensus.
Table 4.
Overview of synthesized themes and descriptive themes
| Theme | Descriptive Theme |
|---|---|
| 1: Physical and psychological burden | 1: Physical health burden |
| 2: Emotional burden and self-reliance | |
| 2: Economic burden and social restrictions | 3: Employment and financial burden |
| 4: Social withdrawal and identity disruption | |
| 3: Role conflict and loss of self | 5: Trapped in the caregiving role and loss of autonomy |
| 4: Inadequate support | 6: Lack of familial and social support |
| 7: Insufficient informational and professional support | |
| 5: Cultural obligations and self-sacrifice | 8: Caregiving as a moral and cultural obligation |
| 9: Self-sacrifice and neglect of personal health |
Thematic findings
This meta-synthesis integrated qualitative evidence to explore the lived experiences of caregiving burden among primary caregivers of patients with neurological conditions. Through thematic synthesis, nine descriptive themes were generated and subsequently synthesised into five overarching analytical themes: (1) physical and psychological burden; (2) economic burden and social restrictions; (3) role conflict and loss of self; (4) inadequate support; and (5) cultural obligations and self-sacrifice.
Theme 1: Physical and psychological burden
Descriptive theme 1: Physical health burden
Due to prolonged high-intensity caregiving tasks, such as assisting with mobility, toileting, feeding, and managing excreta, as well as the need for continuous vigilance and frequent night-time monitoring, caregivers commonly experienced sleep disruption, persistent fatigue, bodily pain, and exacerbation of pre-existing chronic conditions. Many described having little opportunity to rest because patients required constant supervision and assistance, leaving them physically exhausted.
I only sleep two hours a day, and I haven’t slept well taking care of him. [28]
Some caregivers reported that the demands of caregiving interfered with their ability to attend to their own health needs. As caregiving responsibilities took priority, personal medical care and treatment were often delayed or neglected.
I have carotid plaque and haven’t taken my prescribed medication for two days since coming to the hospital. [28]
Others described noticeable changes in their physical condition associated with prolonged stress and sleep deprivation, including changes in body weight and overall physical well-being.
I do not sleep because of this child [adult daughter]. I have been wearing a size 52, but since Elsie’s accident, I have changed. [19]
For some caregivers, the physical burden was compounded by the worsening of existing health problems. Persistent stress, limited rest, and the absence of respite contributed to the aggravation of chronic illnesses.
I’m so stressed out my ulcerative colitis has flared up. I just never get a break. I’m just miserable to be honest. [40]
Collectively, these accounts illustrate how prolonged caregiving demands were experienced as an ongoing physical burden characterised by sleep disruption, fatigue, deterioration of physical health, and the neglect of caregivers’ own healthcare needs.
Descriptive theme 2: Emotional burden and self-reliance
Caregivers in this synthesis consistently described intense and enduring emotional distress arising from uncertainty about the patient’s prognosis, witnessing substantial changes in the patient’s personality and functioning, and managing the ongoing demands of caregiving. Many reported persistent feelings of sadness, anxiety, fear, helplessness, guilt, and despair. The emotional burden was often linked to observing the patient’s loss of independence and altered identity, which many caregivers found particularly difficult to accept.
I feel sad because his life has totally passed; he is really not the same kind of person. I am stressed out because he cannot do anything for himself. [19]
Over time, some caregivers described a gradual loss of emotional vitality, reporting that they were no longer able to experience positive emotions or remember what happiness felt like. Others portrayed emotional distress as an overwhelming sense of hopelessness and psychological exhaustion that permeated everyday life.
I never feel happy, I can’t remember what feeling happy is. (Celina, Woodford et al., 2018).
I feel as though I am losing my mind and I feel extremely sad, very sad. my life seems so dark. [19]
Spousal caregivers, in particular, described profound loneliness that extended beyond social isolation. Many felt that others could not fully understand the emotional impact of losing the relationship they once had with their partner while continuing to provide care. This sense of invisible grief contributed to feelings of emotional abandonment and despair.
The loneliness is infinite. I never wish for his death. but I do wish for mine. [26]
In this context, passive wishes for their own death were expressed not as a desire for the patient’s death, but as an indication of extreme emotional exhaustion, hopelessness, and a longing for relief from persistent suffering.
Alongside these emotional struggles, many caregivers described relying primarily on themselves to manage caregiving responsibilities. Self-reliance was often driven by a desire not to burden others, limited availability of support, and the belief that caregiving responsibilities should be managed within the family. Even when feeling overwhelmed, caregivers frequently chose to continue carrying responsibilities alone rather than seeking assistance.
I can carry all the tasks on my shoulder. Sometimes I feel overwhelmed. Is there any other choice? I just want to make it through. [39]
I don’t want to trouble others. And everyone has their own things to do. I will feel sorry if I ask for others’ help more frequently. [39]
Collectively, these accounts illustrate that emotional burden was experienced as persistent sadness, anxiety, loneliness, helplessness, and despair. For some caregivers, emotional distress reached a level where they expressed passive wishes for their own death. Many also described relying primarily on themselves to cope with caregiving demands, even when feeling overwhelmed and in need of support.
Theme 2: Economic burden and social restrictions
Descriptive theme 3: Employment and financial burden
Caregivers in this synthesis consistently reported that assuming the caregiving role necessitated leaving paid employment or substantially reducing working hours, resulting in significant loss of household income. Many described this as an unavoidable consequence of caregiving, as the intensity and unpredictability of care demands required them to remain constantly available to supervise patients, attend medical appointments, and provide assistance with daily activities.
I had to leave my job and look after him. For the first six months I had to be with him all the time, I could never leave his side. [19]
The financial impact of employment disruption was compounded by the substantial costs associated with treatment and long-term care. Caregivers described expenses related to surgery, medication, rehabilitation, transportation, accommodation, and home modifications as significant and ongoing burdens.
I was teaching. had to leave the job. I have no job, no income. [24]
For caregivers who sought treatment across different regions, financial strain was further intensified by repeated travel and reimbursement procedures, which imposed additional economic and time-related burdens.
We came from another county for treatment, and now we have to go back and forth to handle reimbursement—it’s not just the money, but the time spent also adds to the burden. [28]
Even among caregivers who remained employed, some described feelings of embarrassment and discomfort when relying on relatives or friends for financial assistance because of reduced earning capacity.
I don’t have a financial source if I quit my job. Asking money from them made me embarrassed and upset. [33]
Collectively, these accounts illustrate that employment disruption, loss of income, and ongoing care-related expenses were experienced as persistent financial pressures that affected caregivers throughout the caregiving journey.
Descriptive theme 4: Social withdrawal and identity disruption
Caregivers in this synthesis described a progressive contraction of their social lives as caregiving responsibilities consumed their time and energy. Continuous supervision, attendance at medical appointments, and the need to remain available for patients left little opportunity to maintain previous hobbies, leisure activities, or social relationships. Many reported that they were no longer able to participate in activities that had previously provided enjoyment, social connection, and a sense of normality.
I wouldn’t say your friends forget about you, but you find when situations change that people find it difficult to sort of socialise with you. [42]
For some caregivers, giving up long-standing personal routines, such as exercise or community activities, contributed to a marked reduction in social contact and a growing sense of disconnection from life outside the home.
I usually like to do tai chi—before, I’d go to the community square every morning with a group of friends, but since I started taking care of (the patient), I can’t do it anymore. I haven’t seen those friends for months. [28]
Others described how physical exhaustion and competing caregiving demands limited their ability to maintain friendships and participate in social activities, leaving them with fewer opportunities for social interaction.
My hobbies were affected. and the social activities too because I didn’t have the energy to train. friendships were also affected because I didn’t have the energy to meet. [41]
Alongside social withdrawal, many caregivers experienced a profound disruption to their sense of identity. The sustained demands of caregiving often overshadowed previous professional, social, and personal roles, leaving caregivers feeling disconnected from the person they had once been.
I have been a very successful high achieving person. people don’t ask me those questions anymore, so I have lost my place, in a sense, in the world. [31]
Spousal caregivers, in particular, described a fundamental shift in how they perceived themselves and their relationship with the care recipient. As caregiving tasks increasingly dominated daily life, many came to identify primarily as caregivers rather than partners, reflecting changes in both their roles and relationships.
I don’t really. think of myself. as [husband’s] wife, I am his carer really. And I don’t think he thinks of me as his wife. [31]
For some caregivers, identities previously associated with employment, friendships, family roles, or personal achievements became overshadowed by the caregiving role.
I am the caregiver. having lost my previous identity. [26]
Collectively, these accounts illustrate that social withdrawal and identity disruption were experienced as closely interconnected aspects of caregiving. As opportunities for social participation diminished, many caregivers described losing contact with valued activities, relationships, and roles that had previously contributed to their sense of self. Over time, caregiving increasingly became the defining feature of daily life and personal identity.
Theme 3: Role conflict and loss of self
Descriptive theme 5: Trapped in the caregiving role and loss of autonomy
Caregivers in this synthesis described a profound sense of being trapped within their caregiving role, with little control over their time, decisions, or personal space. Many reported that the continuous nature of caregiving left them feeling unable to step away, even briefly, without experiencing guilt or anxiety about the patient’s safety. The absence of alternative caregivers and the need for constant supervision often created a sense of being permanently responsible for the patient.
I have no life at all, if I’m out for two minutes, it’s like we’ve neglected her. [19]
For others, the caregiving role gradually consumed all aspects of daily life. Daily routines, personal interests, social activities, and future plans increasingly revolved around the patient’s needs, leaving little space for personal identity or activities outside the home. A wife caring for her husband described how her life had become entirely redefined by caregiving responsibilities:
So what is my life, then? Nothing. I now live to take care of my husband. [26]
Caregivers frequently described feeling confined to their homes and unable to make spontaneous decisions about everyday activities. This feeling was influenced by concerns about the patient’s safety, the absence of substitute caregivers, and the need to remain constantly available to provide assistance.
It feels like I’m a prisoner in my own home. You feel as if you’re a prisoner and you can never get up in the morning and say ‘I think I’ll just go here’ or ‘I’ll just go there’. [30]
For some caregivers, the onset of a sudden neurological event, such as stroke or traumatic brain injury, was described as completely overturning previous life plans and expectations. Career aspirations, retirement plans, travel, social activities, and other personal goals were often postponed, abandoned, or permanently altered as caregiving became the dominant focus of daily life.
The stroke has turned my life on its head. [26]
Collectively, these accounts illustrate that loss of autonomy was experienced as an inability to make independent decisions, maintain previous routines, or pursue personal goals. Many caregivers described caregiving as an all-encompassing responsibility that restricted their freedom, altered future plans, and left them feeling confined by the demands of the caregiving role.
Theme 4: Inadequate support
Descriptive theme 6: Lack of familial and social support
Caregivers in this synthesis frequently reported that support from family members and friends was limited, inconsistent, or declined over time. Family support—including assistance with daily caregiving tasks, respite care, financial assistance, transportation, and emotional encouragement—was often perceived as insufficient or unavailable when most needed. Some caregivers described disappointment and frustration when close relatives were unwilling or unable to share caregiving responsibilities, which increased their sense of burden.
His family is not helpful, and my family is busy, if people helped more, then maybe things would be better, but they just do not. [21]
Even when family members expressed willingness to help, caregivers often felt that relatives had competing responsibilities and limited capacity to provide sustained support. As a result, caregiving responsibilities continued to fall primarily on the main caregiver.
They all have their own lives to lead too. They have their own ship to sail too. [42]
Similarly, support from friends and broader social networks was frequently described as diminishing over time. Caregivers reported that friends initially expressed concern or offered assistance, but that this support often became less available as the caregiving situation continued.
People cannot. I realised that people actually cannot help you much. At first they are very nice, but then. you have to deal with it yourself. [35]
Collectively, these accounts illustrate that familial and social support was often perceived as limited, inconsistent, or unsustainable over time. Many caregivers described feeling largely responsible for managing caregiving demands despite occasional assistance from relatives, friends, or community members.
Descriptive theme 7: Insufficient informational and professional support
Caregivers in this synthesis consistently reported that the informational and professional support available to them was insufficient, poorly timed, or difficult to access. Many described receiving only written materials or brief discharge instructions, with little opportunity to discuss concerns with healthcare professionals. As a result, caregivers often felt unprepared to manage complex caregiving responsibilities after hospital discharge and were uncertain about how to support the patient at home.
I was given a pack from the hospital and that’s it—I had to take home and read. I was terrified. There was just no one for me to talk to. [40]
Others described a lack of disease-related knowledge and prognostic information, which contributed to uncertainty about the patient’s condition and anxiety about the future. Caregivers frequently reported that they had not received clear explanations regarding the nature of the illness, expected recovery trajectory, or practical aspects of day-to-day care.
I didn’t know what to expect and I wasn’t given any directions or any assistance. So initially it was just frightening. [40]
I don’t know much about the disease, and I don’t know how serious my mother is now. [28]
One caregiver described the absence of clear information and guidance from healthcare professionals as leaving him feeling directionless and uncertain about how to support the patient:
a ship without a rudder [21]
Even when professional support services—such as psychological counselling, follow-up care, or respite services—were available, they were often offered after the acute phase of illness, missing the period when caregivers experienced the greatest need for assistance. Some caregivers felt that support provided months later was no longer helpful because they had already struggled through the most challenging period alone.
I don’t remember exactly how long it was, but it was a few months later, and by then I already felt it was too late. I would have wanted it during the first week. [41]
In addition to concerns about timing, some caregivers reported dissatisfaction with the accessibility and quality of healthcare services. Long waiting times, difficulties accessing care, and perceived poor communication from healthcare staff contributed to frustration and reduced confidence in formal healthcare systems.
you have to wait for hours. some of them are not polite in their communication. why some people prefer the herbalist? [24]
When professional support was eventually offered, some caregivers declined it because they felt uncomfortable involving unfamiliar professionals in their personal and family lives. This reluctance was often associated with concerns about privacy, mistrust of outsiders, or discomfort discussing personal matters with psychologists, counsellors, or other healthcare professionals.
That was when that psychologist came. But none of us wanted to talk to her. I think none of us really wanted to let in a completely new, unknown person like that. [41]
Collectively, these accounts illustrate that informational and professional support was frequently perceived as insufficient, delayed, difficult to access, or poorly aligned with caregivers’ immediate needs. Many caregivers described feeling unprepared, uncertain, and unsupported during critical stages of the caregiving journey.
Theme 5: Cultural obligations and self-sacrifice
Descriptive theme 8: Caregiving as a moral and cultural obligation
In several studies conducted in East Asian cultural contexts, caregiving was frequently described not as a personal choice but as a moral duty rooted in cultural and family expectations, including filial responsibility, family obligation, marital commitment, and reciprocity for care received earlier in life [33, 39]. Within this framework, caregiving was perceived as a natural and expected expression of commitment to family members.
For adult children, caregiving was commonly understood as a responsibility arising from the parent–child relationship. Many described caring for their parents as an obligation that should be fulfilled regardless of personal circumstances, reflecting deeply held beliefs about respect for and responsibility toward parents.
She [my mother] gave me life, and thus this is my responsibility. I can never say no to it. [33]
For spousal caregivers, caregiving was similarly framed as a marital obligation. Many viewed caring for an ill partner as an integral part of the commitment established through marriage and as a responsibility that should be maintained during periods of illness and adversity.
Being husband and wife is like this, we must help each other when there is adversity. I have the obligation to take care of him and I can’t pass him on to anyone else. (Participant #3, wife, Qiu et al., 2018)
In some instances, caregiving was also interpreted as an act of reciprocity, providing an opportunity to return the care, support, and devotion that caregivers had previously received from the patient. This sense of reciprocal responsibility was particularly evident among long-term spouses.
I must take good care of her. She is my wife. We have been married for 50 years. Now, it’s time I repay her. [39]
Collectively, these accounts illustrate that caregiving was often understood as a moral and relational obligation embedded within family and marital relationships. For many caregivers, responsibilities toward parents or spouses were perceived as duties that should be fulfilled regardless of personal sacrifice, reflecting deeply held cultural expectations regarding family responsibility and mutual care.
Descriptive theme 9: Self-sacrifice and neglect of personal health
Driven by a strong sense of duty and responsibility toward the patient, caregivers in this synthesis consistently prioritised patients’ needs above their own health and well-being. Many described neglecting their own medical needs, delaying or foregoing personal healthcare, and continuing physically demanding caregiving tasks despite experiencing symptoms of illness or exhaustion. The demands of caregiving often left little time, energy, or attention for self-care, and many caregivers perceived their own health as secondary to the patient’s needs.
Even when healthcare professionals advised caregivers to attend to their own well-being, many reported difficulty translating this advice into practice, as the demands of daily care left limited opportunity for rest, exercise, or preventive healthcare.
The only advice I got was you’ve got to look after yourself. Well, how do you do that? [40]
The neglect of personal health was reflected in accounts of poor diet, insufficient physical activity, sleep deprivation, and failure to attend to chronic health conditions. Some caregivers described eating poorly, gaining or losing weight, and experiencing fatigue, yet continuing to prioritise caregiving tasks over their own health needs.
I’ve eaten too much and exercised too little, I also feel sleep deprived. I’m clearly a better advocate and caregiver for others than I am for myself. [39]
In some instances, caregivers with newly diagnosed or pre-existing chronic conditions continued to engage in physically demanding caregiving tasks without attending to their own health concerns. This pattern of self-neglect was often associated with the perception that the patient’s needs were more urgent than their own.
Sometimes I’m anxious about my newly diagnosed hypertension. at that time, I just tried very hard to lift him up without thinking of my diagnosis. [39]
Collectively, these accounts illustrate that self-sacrifice and neglect of personal health were common experiences among caregivers. Many described postponing their own healthcare needs, ignoring symptoms of illness, and continuing caregiving activities despite physical exhaustion or health concerns. Personal health was frequently viewed as secondary to the immediate needs of the patient.
Confidence in the findings
The confidence in each of the five synthesised findings was assessed using the GRADE-CERQual approach, considering methodological limitations, coherence, data adequacy, and relevance [43]. CERQual assessments were made through discussion between two reviewers, with disagreements resolved through consensus. Overall, confidence ratings ranged from moderate to high across the five themes, as detailed in Table 5.
Table 5.
Summary of qualitative findings (GRADE-CERQual assessment of confidence)
| Theme | Methodological limitations | Coherence | Data adequacy | Relevance | Overall confidence |
|---|---|---|---|---|---|
| 1 | Minor concerns | High | High | High | High |
| 2 | Moderate concerns | High | Moderate | High | Moderate |
| 3 | Moderate concerns | High | Moderate | High | Moderate |
| 4 | Minor concerns | High | High | High | High |
| 5 | Moderate concerns | Moderate | Moderate | High | Moderate |
Themes 1 (Physical and psychological burden) and 4 (Inadequate support) were rated as high confidence. These findings were supported by consistent evidence across studies with relatively minor methodological limitations and adequate to rich data. The high number of contributing studies and the coherence of findings across diverse settings strengthened confidence in these themes.
Themes 2 (Economic burden and social restrictions), 3 (Role conflict and loss of self), and 5 (Cultural obligations and self-sacrifice) were rated as moderate confidence. Although these findings demonstrated generally good coherence and relevance, moderate concerns remained regarding methodological limitations in some contributing studies. In addition, Themes 2 and 3 were supported by fewer contributing studies and less extensive data than Themes 1 and 4, resulting in moderate concerns about data adequacy. For Theme 5, moderate concerns regarding coherence reflected variations in the influence of cultural values across different sociocultural contexts, although the overall pattern of findings remained consistent. These factors collectively reduced confidence from high to moderate. Future research involving more diverse populations and settings may further strengthen confidence in these findings.
Discussion
The multifaceted and cumulative nature of caregiver burden in neurological settings
The coexistence of physical exhaustion and emotional distress observed in this synthesis suggests that caregiver burden in neurological settings is multidimensional and cumulative rather than comprising isolated challenges. Similar findings have been reported across caregiving populations, where sustained caregiving responsibilities are associated with adverse physical and psychological outcomes, including sleep disturbance, chronic health problems, anxiety, and depressive symptoms [44, 45]. However, compared with caregivers of individuals with chronic progressive illnesses, caregivers of neurological patients may face unique challenges related to the sudden onset and unpredictable trajectory of conditions such as stroke, traumatic brain injury, and brain tumours. These circumstances often require family members to assume intensive caregiving responsibilities with little preparation, while simultaneously adapting to uncertainty regarding prognosis and recovery.
This interpretation is supported by previous research indicating that neurological caregivers experience abrupt role transitions and substantial uncertainty regarding future outcomes [46]. In the present synthesis, caregivers frequently described being overwhelmed by the rapid changes in their lives and responsibilities following the patient’s illness or injury. Spousal caregivers appeared particularly vulnerable to this burden, as they not only assumed extensive caregiving responsibilities but also experienced changes in established marital and relational roles. Similar observations have been reported in previous studies, which suggest that spouses often experience greater emotional strain than other caregiver groups because of the close emotional connection with the care recipient and the disruption of previously reciprocal relationships [44].
The findings also suggest that physical and psychological burdens are closely interconnected. Caregivers described how prolonged caregiving demands, night-time vigilance, and continuous supervision contributed to physical exhaustion, while uncertainty, emotional responsibility, and concerns about the patient’s future intensified psychological distress. Previous longitudinal research has similarly demonstrated that sustained caregiving stress may have important long-term consequences for caregivers’ health and well-being [7]. Together, these findings highlight the cumulative nature of caregiver burden and emphasise the need to consider caregivers’ physical and psychological health as interconnected rather than separate domains.
From a clinical perspective, these findings reinforce the importance of recognising family caregivers as secondary recipients of care within neurological services. Early identification of sleep disturbance, emotional distress, and unmet support needs may help reduce the accumulation of caregiver burden over time. Previous evidence suggests that psychoeducational and psychosocial support interventions may improve caregiver well-being, indicating the potential value of incorporating caregiver-focused assessment and support into routine neurological care pathways [44]. Taken together, these findings suggest that caregiver burden in neurological settings should be understood as a multifaceted and cumulative process, in which physical, psychological, and relational challenges interact and reinforce one another over time.
Economic strain and social disruption as interconnected stressors
The present synthesis suggests that economic strain and social disruption are closely interconnected dimensions of caregiver burden rather than independent challenges. Financial pressures arising from caregiving responsibilities often extended beyond direct medical expenses and were closely linked to disruptions in employment, daily routines, and opportunities for social participation. Many caregivers reported reducing work hours, leaving employment, or experiencing difficulties maintaining their previous occupational roles, while simultaneously facing increased expenditures related to treatment, rehabilitation, transportation, accommodation, and long-term care needs. These experiences created a reinforcing cycle in which financial difficulties restricted social engagement, while social isolation reduced access to practical and emotional resources that might otherwise help alleviate economic stress.
This finding is consistent with evidence from studies involving caregivers of patients with stroke, traumatic brain injury (TBI), and brain tumours. A recent systematic review of stroke caregivers identified financial hardship, employment disruption, and reduced social participation as major components of caregiver burden, highlighting the broad impact of caregiving on both economic stability and quality of life [47]. Similarly, a systematic review and meta-analysis of TBI caregiver research reported substantial psychological and practical burdens associated with caregiving responsibilities, particularly in the context of prolonged rehabilitation and uncertainty regarding recovery [48]. Evidence from brain tumour caregiving research further demonstrates that caregiving responsibilities negatively affect social participation, family functioning, work life, and overall quality of life [49].
The sudden onset and unpredictable recovery trajectories characteristic of many neurological conditions may further intensify these challenges. Unlike caregivers of individuals with progressive chronic illnesses, neurological caregivers are often required to assume complex caregiving responsibilities with little preparation, while simultaneously adapting to uncertainty regarding prognosis and long-term functional outcomes. This abrupt transition may explain why many caregivers in the present synthesis described rapid disruptions to employment, finances, and social relationships.
The present synthesis also highlights the important role of social participation in maintaining caregiver well-being. As caregiving responsibilities increased, many caregivers reported withdrawing from previously valued hobbies, community activities, and interpersonal relationships. Evidence from brain tumour caregiver research suggests that restrictions in social activities and reduced opportunities for meaningful interpersonal engagement are associated with poorer quality of life and greater caregiver burden [49]. Importantly, in the studies included in this synthesis, social withdrawal was frequently accompanied by disruptions to personal identity and the loss of valued social roles, suggesting that the consequences of caregiving extend beyond practical restrictions and affect caregivers’ broader sense of self and social belonging.
Taken together, these findings indicate that economic strain and social disruption should be understood as interacting and mutually reinforcing dimensions of caregiver burden. Rather than representing separate consequences of caregiving, they appear to operate as part of a broader cycle that can progressively erode caregivers’ psychological well-being, social connectedness, and capacity to sustain long-term caregiving.
Role overload and ambiguous loss as interrelated psychological stressors in neurological caregiving
The findings of this meta-synthesis indicate that role overload and ambiguous loss constitute two closely interrelated psychological stressors that jointly shape the caregiving experience in neurological and neurocritical care settings, including conditions such as stroke, traumatic brain injury, and brain tumours requiring acute neurological management. Rather than functioning as isolated burdens, these stressors appear to interact dynamically, producing a compounded and sustained psychological strain that extends beyond the immediate caregiving tasks.
Role overload in these contexts is primarily driven by the abrupt assumption of complex and sustained caregiving responsibilities following sudden neurological injury or neurological intervention. Consistent with Pearlin’s Stress Process Model [50], the accumulation of competing caregiving demands—including continuous patient supervision, assistance with activities of daily living, coordination of rehabilitation, and management of household or occupational responsibilities—creates persistent role strain that gradually erodes caregivers’ physical and psychological resources. The sudden onset, medical complexity, and unpredictable trajectories of neurological conditions further intensify this process by severely limiting caregivers’ opportunity for anticipatory adjustment, thereby accelerating forced role transition and long-term role engulfment.
In parallel, this synthesis highlights ambiguous loss as a central and under-recognised source of psychological distress. Caregivers frequently described a persistent sense of grieving for the “pre-illness” identity of the patient, particularly in response to profound changes in personality, cognition, emotional regulation, and interpersonal functioning. In line with Boss’s Ambiguous Loss Theory [51], this experience reflects a form of unresolved and non-finite grief in which the loved one is physically present but psychologically and relationally transformed. Unlike conventional bereavement, this type of loss lacks social and temporal closure, thereby sustaining chronic grief responses and preventing adaptive resolution of attachment bonds.
Importantly, our findings suggest that role overload and ambiguous loss are closely interconnected rather than independent stressors, both arising from the progressive disruption of relational identity within the caregiving dyad. Role overload primarily reflects the increasing practical responsibilities associated with caregiving, whereas ambiguous loss stems from the gradual erosion of emotional reciprocity, relational continuity, and shared identity despite the patient’s physical presence. These processes appear to reinforce one another. As caregiving responsibilities expand, caregivers become increasingly exposed to the patient’s cognitive, behavioural, and personality changes, intensifying experiences of ambiguous loss. In turn, unresolved ambiguous loss depletes emotional resources and reduces perceived coping capacity, making caregiving demands feel even more overwhelming. This reciprocal process creates a self-reinforcing cycle in which functional burden and identity-related grief continually amplify one another, offering a potential explanation for the persistent psychological distress commonly observed among caregivers of individuals with neurological conditions.
Spousal caregivers appear especially vulnerable to this dual burden. Beyond the intensity of caregiving tasks, they often experience a fundamental restructuring of previously reciprocal marital relationships into asymmetric care-based dynamics. The loss of emotional reciprocity, companionship, and shared life identity may intensify both role strain and ambiguous grief, resulting in heightened loneliness and relational distress. This aligns with prior evidence suggesting that close relational proximity to the care recipient is associated with more severe emotional burden due to the simultaneous disruption of caregiving roles and intimate attachment bonds [52].
From a clinical perspective, these findings underscore the need to conceptualise caregiver burden in neurological and neurocritical care contexts as a dual-process phenomenon grounded in both functional role escalation and relational identity disruption. Interventions addressing only practical caregiving skills may therefore be insufficient for this population.
Overall, role overload and ambiguous loss should be understood as mutually reinforcing psychological stressors operating through a shared mechanism of relational identity disintegration. This dual burden model highlights the importance of early identification of caregiver strain and the development of comprehensive support systems that address both the functional and emotional dimensions of caregiving.
Informational and professional support deficits as a driver of caregiver burden
The findings of this meta-synthesis indicate that deficits in informational and professional support represent a critical and potentially modifiable driver of caregiver burden in neurological and neurocritical care contexts, including stroke, traumatic brain injury, and brain tumour–related conditions requiring acute neurological management. Caregivers consistently reported being insufficiently prepared for their caregiving roles at the time of hospital discharge, with limited access to disease-specific knowledge, practical caregiving skills, and prognostic information. This lack of preparedness was further exacerbated by inadequate transitional support during the hospital-to-home trajectory, leaving caregivers to manage complex care needs with minimal guidance during the early post-discharge period.
Evidence from high-quality syntheses supports the central role of caregiver preparedness in shaping psychological outcomes. Higher levels of caregiver preparedness have been consistently associated with reduced psychological distress and improved health-related outcomes in stroke populations [53]. In addition, evidence from systematic and scoping reviews of transitional care demonstrates that structured discharge education and coordinated transitional interventions significantly improve caregiver readiness and reduce burden across neurological and chronic illness populations [54, 55]. Although these studies are not exclusively neurological, they provide robust support for the general principle that effective discharge preparation and continuity of care are essential determinants of caregiver well-being.
Beyond preparedness, the timing and accessibility of professional support emerged as critical determinants of caregiver experience. Caregivers identified the early post-discharge period—particularly the first weeks following hospital discharge—as the phase of greatest unmet need. However, professional support services, including follow-up care, psychological counselling, and respite interventions, were often delayed, fragmented, or inaccessible during this critical window. Evidence from transitional neurocritical care models indicates that structured early follow-up systems can improve continuity of care and post-discharge outcomes [55]. Similarly, service utilization studies highlight that although targeted resources such as stroke helplines can provide timely and person-centred guidance, many caregivers fail to access these services due to lack of awareness or psychological barriers [56].
In addition to structural and temporal barriers, attitudinal and cultural factors also influenced the uptake of professional support. Some caregivers expressed reluctance to engage with unfamiliar professionals due to concerns about privacy, stigma, or mistrust of external intervention in family caregiving. Theoretical frameworks of stigma emphasize that stigma operates through mechanisms such as anticipated discrimination, internalized stigma, and reduced willingness to disclose distress, thereby significantly impeding help-seeking behavior [57]. Empirical studies in caregiver populations further demonstrate that internalized stigma and perceived social judgment are associated with reduced engagement with formal support services [58].
Collectively, these findings suggest that informational and professional support deficits in neurological caregiving are multidimensional, encompassing not only the absence of services but also failures in timing, accessibility, communication, and cultural acceptability. The mismatch between caregivers’ immediate post-discharge needs and the delayed or fragmented provision of support represents a critical gap in current care pathways. Addressing this gap requires integrated transitional care models that combine structured discharge education, early post-discharge follow-up, and culturally responsive support systems that align with caregivers’ informational, emotional, and contextual needs.
Empirical evidence in neurocritical care populations further confirms the clinical significance of caregiver burden, demonstrating that caregivers experience mild to moderate levels of burden, with psychological distress associated with factors such as anxiety and cognitive functioning, highlighting the importance of early identification and targeted support strategies [59].
Cultural values, moral obligation, and self-sacrifice in caregiving
The findings of this meta-synthesis indicate that cultural values play a dual role in shaping caregiving experiences in neurological contexts. On one hand, deeply embedded norms of filial piety, familism, marital loyalty, and reciprocal obligation provide a moral framework that sustains long-term caregiving commitment and strengthens family solidarity. On the other hand, these same cultural imperatives may reinforce self-sacrificial behaviours, discourage help-seeking, and increase caregivers’ vulnerability to physical and emotional exhaustion. This duality suggests that culture should be understood not merely as a source of burden but also as a potential resource for resilience and meaning-making in caregiving.
In East Asian cultural contexts influenced by Confucian values, caregiving is frequently perceived as a non-negotiable moral duty rather than a personal choice [60]. Adult children and spouses alike described caring for ill family members as an inherent obligation arising from filial piety, marital commitment, or the desire to reciprocate care received earlier in life. Cross-cultural evidence indicates that caregivers in collectivist societies place greater emphasis on family responsibility and are more likely to perceive caregiving as a moral obligation compared with those in individualistic contexts [61, 62]. Consistent with this, filial piety beliefs have been found to be positively associated with both caregiving commitment and psychological burden [63, 64]. This suggests that while cultural duty motivates care provision, it may also contribute to the internalisation of burden and reluctance to seek external support.
These patterns are not confined to East Asian societies. In sub-Saharan African contexts, caregiving is similarly embedded within extended family systems and communal norms of reciprocity and responsibility. A recent meta-synthesis of informal caregivers providing palliative care for people with advanced cancer across African settings found that caregiving was strongly shaped by cultural expectations of family obligation, which simultaneously served as a source of meaning and a contributor to emotional and physical burden [65]. This finding highlights that, although cultural expressions vary across regions, moral frameworks of family responsibility may represent a shared cross-cultural mechanism that reinforces both caregiving commitment and caregiver strain.
This cultural influence is also evident among migrant populations, where caregiving norms persist beyond the original cultural context and continue to shape behaviour in host societies. A study of Korean-American family caregivers by Kim et al. [66] demonstrated that stronger adherence to heritage cultural values increased the likelihood of assuming caregiving responsibilities within the family rather than seeking external support, thereby intensifying caregiver burden. Similarly, Allam et al. [67] reported that among Arab-Australian caregivers, providing care for older parents is often perceived as a non-negotiable familial duty, while seeking external assistance may be interpreted as a failure of family responsibility. These findings suggest that culturally embedded caregiving norms remain influential even after migration, reinforcing self-sacrificial caregiving patterns across diverse healthcare systems.
Finally, a large cross-cultural study across 20 countries by Ng and Indran [68] further demonstrates the complex role of cultural framing in caregiving experiences. When caregiving is perceived as a moral virtue, caregivers may derive greater meaning and positive appraisal from their role, highlighting that cultural values can simultaneously generate psychological strain and resilience across different contexts.
Despite the predominance of culturally driven self-sacrifice, many caregivers also reported positive psychological outcomes, including a sense of purpose, strengthened family bonds, and personal growth. These positive appraisals suggest that cultural values are not inherently detrimental; rather, their impact depends on the availability of supportive structures that recognise caregivers’ needs and mitigate excessive burden.
Taken together, these findings indicate that cultural values are neither uniformly protective nor uniformly burdensome. Instead, they interact dynamically with structural factors such as access to information, professional support, and respite services to shape caregiver outcomes. Interventions in neurological settings should therefore adopt culturally sensitive approaches that acknowledge the moral significance of caregiving while simultaneously ensuring that caregivers receive adequate practical, emotional, and systemic support to sustain their health and caregiving capacity.
Strengths and limitations
To the best of our knowledge, this is the first meta-synthesis to systematically integrate qualitative evidence on caregiving burden among primary caregivers of patients with neurological conditions. This study included 26 studies involving 507 caregivers, providing a comprehensive overview of caregivers’ lived experiences. Moreover, it was conducted in accordance with JBI methodological guidance, which enhanced transparency and rigour.
Several limitations should be acknowledged. First, all included studies were published in English, which may have introduced language bias and excluded relevant studies published in other languages. In addition, 23 reports identified during the screening process could not be retrieved for full-text assessment. Although every reasonable effort was made to obtain these reports, their exclusion may have introduced selection bias by potentially omitting relevant qualitative evidence. Second, most studies originated from high-income countries, which may limit the transferability of findings to low- and middle-income settings and other cultural contexts. Although qualitative studies from African contexts have explored informal caregiving in palliative care and broader chronic illness populations [65], evidence specifically addressing neurological and neurocritical caregiving in these regions remains limited.
Third, most included studies captured caregiving experiences at a single time point, limiting understanding of how caregiver burden evolves over time. Future research should consider longitudinal designs to better capture the dynamic nature of caregiving.
Fourth, there is a possibility that some included studies involved overlapping participant samples or similar research settings; however, this could not be formally verified and should be considered when interpreting the findings.
Conclusion
This meta-synthesis highlights the multifaceted burden experienced by primary caregivers of patients with neurological conditions, including physical and emotional exhaustion, financial hardship, social isolation, role engulfment, and ambiguous loss related to patients’ personality and cognitive changes. It also underscores contributing factors such as inadequate informational and professional support, and culturally embedded patterns of self-sacrifice that shape caregiving experiences. The findings emphasise the critical role of timely professional support, structured discharge education, and accessible respite care in alleviating caregiver burden, while also highlighting the importance of culturally sensitive approaches that acknowledge the moral significance of caregiving without neglecting caregivers’ own health needs.
Overall, this study demonstrates the importance of systematic, person-centred, and culturally responsive support for family caregivers to reduce burden and enhance the quality of long-term neurological care. Future research should employ longitudinal designs to capture the evolving nature of caregiver burden over time and examine its manifestations across diverse cultural and healthcare settings, particularly in low- and middle-income regions where neurological and neurocritical care services are expanding.
Acknowledgements
Not applicable.
Abbreviations
- JBI
Joanna Briggs Institute
- PROSPERO
International Prospective Register of Systematic Reviews
- PRISMA
Preferred Reporting Items for Systematic Reviews and Meta‑Analyses
- MeSH
Medical Subject Headings
- HADS
Hospital Anxiety and Depression Scale
- TBI
Traumatic Brain Injury
Author contributions
Shuying Liao and Shujuan Duan contributed equally to this work as co‑first authors. Jianxia Lyu and Li Zhang are co‑corresponding authors, with Jianxia Lyu serving as the lead corresponding author. SYL, JXL, SJD: proposed the research question and designed the theoretical structure of the systematic review; SYL, XQX, LW: completed the systematic search of the literature, quality assessment, and data extraction; SYL, SJD: wrote the manuscript; JXL, LZ: critically revised the intellectual content of the manuscript. All authors read and approved the final manuscript.
Funding
This research did not receive any funding.
Data availability
No datasets were generated or analysed during the current study.
Declarations
Ethics approval and consent to participate
Not applicable.
Ethical consideration
The study protocol has been registered on the PROSPERO website (registration number CRD420261351829). This study is a systematic review with no patient or public participation.
Human ethics and consent to participate
Not applicable.
Consent for publication
Not applicable.
Competing interests
The authors declare no competing interests.
Footnotes
Publisher’s note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Shuying Liao and Shujuan Duan contributed equally to this work.
Contributor Information
Li Zhang, Email: 249120753@qq.com.
Jianxia Lyu, Email: lvjianxia@scszlyy.org.cn.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
No datasets were generated or analysed during the current study.