Overload, Burden and Strategies of Caregivers in Palliative Contexts: A Narrative Review
Aizpurua-Juaristi A, Cabezas-Martin E, Comeron-Pena B, Encinas-Diaz N, Renco LA and Canedo E
Published on: 2025-06-13
Abstract
Background: Palliative care relies heavily on both formal and informal caregivers, whose roles are essential yet often underappreciated. However, the high emotional, physical, and psychological toll on caregivers contributes to significant overload and burnout.
Aim: This review aims to identify and analyse evidence-based nursing interventions that address caregiver overload, with attention to both formal and informal contexts that alleviate caregiver burden and promote well-being.
Methods: A scoping review methodology guided by the PCC model was conducted in October 2024 in CINAHL, PubMed, and Cochrane Library. Articles in English and Spanish, from 2014 to 2024, were included.
Results: Twenty-six articles focusing on caregiver burden, nursing interventions, and palliative care were included. Nursing interventions such as psycho educational programmes, active listening, stress management training, expressive writing, and mindfulness therapy were founded. Tools like the Zarit Burden Interview and Maslach Burnout Inventory were widely used to assess caregiver distress.
Conclusion: Caregiver burden in palliative settings requires a multidimensional response. Formal caregivers, workplace improvements and ongoing training are key. For informal caregivers, structured psycho educational support, financial aid, and accessible resources are vital. Nursing professionals are uniquely positioned to provide evidence-based, empathic care strategies that benefit both caregivers and patients.
Keywords
Burnout; Caregiver burden; Informal caregiving; Nursing interventions; Palliative care; Psychosocial supportIntroduction
Caregiving constitutes a fundamental element in the provision of palliative care, serving as a critical bridge between the complex needs of patients and the healthcare system. Formal caregivers operate within structured clinical environments and are typically subject to institutional protocols and regulations. In contrast, informal caregivers, most commonly family members or close friends, provide sustained, unpaid care to individuals with serious or life-limiting conditions [1-3].
Both groups of caregivers are routinely exposed to considerable emotional strain, physical fatigue, and social isolation, all of which can have a profound impact on their overall well-being [4-7]. As the global population continues to age and the incidence of chronic diseases such as cancer, Alzheimer disease, and end-stage organ failure rises, the demand for caregiving, both formal and informal, is expected to increase significantly [1].
While palliative care aims not only to relieve patient suffering but also to enhance the quality of life for caregivers, the needs of these individuals often remain unaddressed [5,6]. The burdens associated with caregiving, particularly in end-of-life contexts, may result in caregiver burnout, a syndrome marked by emotional exhaustion, depersonalisation, and a diminished sense of professional or personal efficacy [1].
According to Shih et al. (2023), informal caregiver burden is characterised by physical and emotional exhaustion, psychological distress, family dependency, stress, and depersonalisation, among other factors, which can at times result in a decline in the quality of care provided to the dependent relative [2]. In contrast, as noted by Oware et al. (2024), formal caregiver burden is more closely associated with staff shortages, inadequate resources, excessive working hours, lack of recognition for work performed, and frequent exposure to patient death [3]. These circumstances underscore the necessity for targeted interventions that address the distinct characteristics and needs of each caregiver group [8,9].
This review was motivated by the growing recognition of caregiver burnout and the lack of cohesive strategies to support both formal and informal caregivers. Through a comprehensive synthesis of existing literature, we aim to identify nursing interventions that mitigate the challenges faced by caregivers in palliative contexts.
Methods
This scoping review was conducted in accordance with the Joanna Briggs Institute (JBI) methodology, [10] and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) was also followed [11]. The search was performed in October 2024 using the following databases: CINAHL, PubMed, and Cochrane Library. All types of studies were considered and included. The search was limited to the English and Spanish languages, from 2014 to 2024. No geographical or cultural limitations were imposed, and the reference lists of the full-text articles were screened for additional inclusion. The MeSH terms identified can be appreciated in Table 1 Participants, Concept, and Context (PCC) framework.
Table 1: PCC Framework.
|
P |
Participant |
Formal and Informal Caregivers in palliative care |
|
C |
Concept |
Nursing Interventions |
|
C |
Context |
Burnout |
The identified references were compiled, and duplicates were removed. Findings were preferred by a three-step process: title, abstract, and revision of the full text, as proposed by PRISMA-ScR guidelines [11]. The results of the search and the study inclusion process yielded sixteen relevant articles. The selection process can be appraised as follows in the PRISMA flow diagram Figure 1.

Figure 1: PRISMA Flow Diagram.
The literature found was assessed. After data extraction, all data were conferred by authors, and any disagreements or transcription errors were avoided. The study characteristics were summarized and presented in Table 2.
Table 2: Study Characteristics.
|
## |
Author, Year and Country |
Design |
Source |
Aims |
Participants |
Main Conclusions |
|
#1 |
Bußmann et al., (2023) Germany |
Longitudinal cohort study |
BMC Palliative Care |
Study how the psychosocial burdens of caregivers in palliative care have been affected by the COVID-19 pandemic. |
Formal caregivers |
Organisation/communication and operational measures and the overall assessment during the COVID-19 pandemic were perceived as rather positive. Organisational working conditions and support can strengthen the individual resources and resilience. |
|
#2 |
Chow et al., (2018) USA |
Qualitative study |
Seminars in Oncology Nursing |
To describe the evolution of oncology and palliative nursing in meeting the changing landscape of cancer care. |
Formal caregivers |
Identification and differentiation of Primary vs Specialty Palliative Oncology Nursing specific Skills. Improving patient outcomes and reducing the risk of burnout among caregivers. |
|
#3 |
Claessens et al., (2007) Belgium |
Qualitative review |
Journal of Hospice & Palliative Nursing |
Explain the nursing role in palliative sedation as a therapy fits into the palliative care perspective. |
Formal caregivers |
Nurses play a pivotal role in the prevention and the decision-making process of palliative sedation. Medical and ethical misconceptions concerning the indications, can explain why nurse caregivers experience emotionally draining. |
|
#4 |
Franco-Rocha et al., (2022) Columbia |
Scoping Review |
Revista Cuidarte |
Describe the evidence on the provision of palliative and end-of-life care in adults during the COVID-19 pandemic. |
Informal caregivers |
Highlights the importance of accompaniment of family and loved ones, telehealth, and the role of nursing in palliative care and informal caregivers’ support. |
|
#5 |
Ercolani et al., (2019) Italy |
observational cross-sectional |
Journal of Palliative Care |
Investigate potential correlations between dimensions of burnout and different coping strategies. |
Formal caregivers |
The need to provide professionals training programs about coping and communication skills tailored to fit the professionals' needs according to their work experience in palliative care are highlighted. |
|
#6 |
Gómez-Cantorna et al., (2015) Spain |
analytic correlational |
Journal of Hospice & Palliative Nursing |
Determine whether palliative care unit nursing who treat terminal gerontology patients are more susceptible to occupational stress. |
Formal caregivers |
The more sociable the caregiver is, the greater the degree of emotional fatigue experienced. A higher degree of neuroticism shows an average degree of emotional fatigue, and caregivers who exhibit high openness to change have low stress levels while experiencing a strong sense of success. |
|
#7 |
Hodiamont et al., (2017) Germany |
observational cross-sectional |
Palliative Medicine |
Develop a culturally adapted German version of the IPOS-Dem and determine content validity as a foundation for comprehensive psychometric testing |
Formal & Informal caregivers |
The IPOS-Dem instrument is imperative to integrate the person-centred approach of palliative care into nursing homes as a key provider of generalist palliative care for people with dementia, exploring the concept of "being affected by" and its implications. |
|
#8 |
Kamal et al., (2016) USA |
Quantitative study |
Journal of Pain Symptom Management |
Sought to understand the prevalence and predictors of burnout using a discipline-wide survey |
Formal caregivers |
Burnout is a major issue facing the palliative care caregivers. Strategies as higher rated self-management activities to mitigate burnout include participating in interpersonal relationships and taking vacations are pointed to sustain the delivery of high-quality care. |
|
#9 |
K?l?ç et al., (2024) Turkey |
Randomized Controlled Trial |
Health Education Research |
Determine the effect of Mindfulness-Based Compassionate Living (MBCL) training given to the informal caregivers of palliative patients on burnout and caregiving burden. |
Informal caregivers |
Mindfulness-Based Compassionate Living (MBCL) training seems to be effective in reducing emotional exhaustion and depersonalization and increasing personal accomplishment and self-compassion among informal caregivers of palliative inpatients. |
|
#10 |
Marchalik et al., (2019) USA |
Quantitative study |
Annals of Palliative Medicine |
Assess reading patterns of practicing HPC clinicians and determine associations between non-medical reading and burnout. |
Formal caregivers |
Burnout was associated with age, reading habits, and fatigue, but not years in practice. Reading non-medical literature on a consistent basis may be associated with a significantly decreased likelihood of burnout, specifically across the depersonalization domain. |
|
#11 |
Oware et al., (2024) Ghana |
Exploratory qualitative design |
BMC Palliative Care |
Explored the challenges and support systems of nurses caring for women with advanced cervical cancer in Accra, Ghana |
Formal caregivers |
The challenges were exposure to frequent deaths, inadequate resources, and workload. Most participants lamented that they received absolutely no support from their workplace, hence their only form of support was from their family and friends. Most of them were no special training in oncology or palliative care. |
|
#12 |
Shih et al., (2023) USA |
Quantitative study & app development |
Cureus |
Examined types of digital devices and categories of smartphone functions used by caregivers and care recipients in comparison to those without any caregiving roles. |
Informal caregivers |
Different patterns of digital device use exist. Caregivers using a digital device app related to health or reporting willingness can benefit to different intervention programs including promoting mental, physical, and social well-being, improving quality of life,reducing disease/disability burden, and preventing burnout. |
|
#13 |
Taib et al., (2020) Malasia |
Cross sectional study |
Internation. Medical Journal |
Determine the strain of caregivers of patients receiving palliative care by YOKUK@Sayang Home Care in the community of Kelantan state |
Informal caregivers |
Caregivers have significant stress. The score was markedly high in physical, routine, anxiety and financial strain. In the non-significant strain group, anxiety has been identified to be common (more than 50%) the dominant domain reported in this study. |
|
#14 |
Tonarelli et al., (2018) Italy |
Prospective & quasi-experimental |
Acta biomed for health professions |
Confirm the results of the previous study using a reduced methodological approach, only two expressive writing sessions. |
Formal caregivers |
Expressive writing is an important strategy for preventing and managing the effects of compassion fatigue. Helps educate caregivers in recognising these feelings and providing them with a "space" and a time for their reflection. This results in significant positive repercussions on the quality of service, reducing burnout risk, implementing coping strategies, and increasing perceived work satisfaction. |
|
#15 |
Wasylynuk et al., (2015) Canada |
Qualitative review |
Cannt Journal |
Outlined a conceptual framework for kidney palliative care for patients with advanced chronic kidney disease (CKD) and discussed issues. |
Formal caregivers |
Important topics to discuss have emerged such as symptom burden, illness trajectories, advance care planning, and complex decision-making, including decisions around the appropriate initiation, withholding and withdrawal of dialysis, and the potential palliative care roles and responsibilities for nursing caregivers. |
|
#16 |
Winstong Wong (2020) USA |
Observational, retrospective and cross-sectional |
The American Journal of Managed Care |
Estimate personal health care costs associated with Alzheimers’ and related dementias (AD). |
Formal & Informal caregivers |
Financial and personal burden experienced by caregivers to patients with AD is immense and often underestimated. It is important to treat and support this caregiver just as much as the patient. MCOs can have a profound impact on the QOL of the patient, caregiver burden, and economic and healthcare burden of AD. Supporting early diagnosis of AD with MTM strategies, early review of emerging therapies, care coordination, and providing covered nonpharmacologic interventions. |
Results
A relevant number of articles (n=16) were included in the final analysis. The studies were published between 2015 and 2024, exceptionally one article published in 2007 was included. The studies were conducted in ten different countries; and five studies were conducted on the United States.
The population comprises both formal and informal caregivers of patients receiving palliative care. A variety of nursing instruments have been identified to assess caregivers, including questionnaires, surveys, structured forms, and interviews. The assessment tools were frequently cited by different authors and can be appreciated in Table 3.
Table 3: Assessment Tools.
|
Author, Year and Country |
Assessment Tools |
|
Bubmann et al., (2023) Germany |
Copenhagen Psychosocial Questionnaire (COPSOQ III): Evaluates key psychosocial risks in the workplace |
|
Ercolani et al., (2019) Italy Gomez-Cantorna et al., (2015) Spain Marchalik et al., (2019) USA K?l?c et al., (2024) Turkey |
Maslach Burnout Inventory (MBI): Measures the frequency and intensity of burnout syndrome, assessing emotional exhaustion, depersonalisation, and personal accomplishment |
|
Ercolani et al., (2019) Italy |
General Health Questionnaire 12 (GHQ-12): Assesses psychological morbidity and the presence of psychiatric disorders |
|
Ercolani et al., (2019) Italy |
Psychophysiological Questionnaire of CBA 2.0: Designed to evaluate the psychosocial profile of caregivers |
|
Ercolani et al., (2019) Italy |
Coping Orientation to Problems Experienced (COPE): Analyses coping mechanisms used in response to everyday stress |
|
K?l?ç et al., (2024) Turkey |
Caregiver Strain Index (CSI): Commonly used in primary care to evaluate the level of burden among caregivers |
|
K?l?ç et al., (2024) Turkey |
Zarit Burden Interview (ZBI): Assesses the degree of burden experienced by caregivers of dependent individuals |
Among the various factors contributing to caregiver burden, psychological components are consistently reported as the most significant for both formal and informal caregivers. Traits such as extroverted personality, psychological instability, low self-esteem, anxiety, chronic stress, emotional exhaustion, depersonalisation, and both physical and emotional strain are frequently identified as key contributors [2,12]. Additionally, limited knowledge or training regarding caregiving responsibilities further exacerbates the burden.
As the illness progresses, the demand for healthcare services and their associated costs tends to increase, adding financial pressure and intensifying the caregivers’ responsibilities [12,13]. Furthermore, a negative attitude or excessive emotional involvement has also been linked to higher levels of caregiver strain [14]. The authors also reported that the absence of effective coping strategies significantly worsens the situation, particularly in challenging contexts such as during a pandemic or when caring for patients with advanced dementia [1,12,15].
Discussion
The evidence consistently highlights the multidimensional challenges encountered by both formal and informal caregivers within palliative care settings. Informal caregivers frequently assume their roles with little to no training and insufficient preparation, which often precipitates rapid emotional and physical decline. In contrast, although formal caregivers are professionally trained, they are frequently constrained by systemic limitations that impede their ability to deliver compassionate and sustained care.
Several authors have emphasised that informal caregivers are especially vulnerable to resource deficiencies, particularly financial limitations, and to the intense dependency of the patients under their care [15-17]. These factors substantially exacerbate the degree of caregiver burden.
Moreover, there is a strong association between caregiver well-being and the quality of patient care [1,13,14,16,18]. When caregivers are overburdened, they are more likely to experience emotional detachment and burnout, which can compromise the safety, empathy, and effectiveness of care delivery [14,16,18]. As such, providing robust and sustained support to caregivers must be considered a fundamental component of all palliative care programmes.
The gendered nature of caregiving also emerges as a critical concern raised by multiple authors [1,12,16,19]. The disproportionate burden placed upon women reflects entrenched societal norms and expectations. This imbalance necessitates targeted public policies, including financial subsidies, access to respite care, and formal recognition of unpaid caregiving work within legal and institutional frameworks [12, 16].
Nurses occupy a central role in bridging the gap between patients' needs and caregivers' capacities. Through the implementation of holistic, family-centred care models, nursing professionals are well-positioned to initiate interventions that enhance caregiver well-being while simultaneously reinforcing the resilience and coherence of the broader care network [3,12-14,20].
Nursing interventions applicable to both formal and informal caregivers include a range of evidence-based strategies, such as the enhancement of coping mechanisms, the development of effective communication skills, active listening, bereavement support, the creation of social support networks, mindfulness practices, and expressive or therapeutic writing and reading [3,12-14,20,21]. Furthermore, early identification of caregiver burden, paired with timely therapeutic management, coordinated interventions, and inclusive decision-making processes involving both patients and families, has been shown to reduce psychological and emotional strain [17].
For formal caregivers, access to structured training programmes and the cultivation of peer and professional support systems are key strategies in mitigating burnout and fostering professional satisfaction [14]. Conversely, for informal caregivers, ensuring equitable access to care services and offering publicly funded or
low-cost interventions are essential measures to alleviate the burden and promote sustained engagement in caregiving responsibilities [15].
Conclusion
The present review reaffirms the critical role played by both formal and informal caregivers in the delivery of palliative care, while highlighting the substantial burden they face, physically, psychologically, and socially. Informal caregivers with limited resources and training, are particularly susceptible to emotional exhaustion and long-term health consequences. Evidence suggests that psycho educational interventions, digital health tools, and structured emotional support can modify this burden, enhancing caregivers' capacity to cope with prolonged caregiving demands, and ultimately improving the quality of care provided to patients.
Similarly, formal caregivers experience occupational stressors including understaffing, long shifts, and emotional fatigue, all of which are exacerbated by systemic limitations. To address these issues effectively, institutional reforms, continuous development, and formal recognition of emotional labour are essential.
Nurses hold a strategic and compassionate leadership position, acting as key facilitators of training and support for caregivers. Adopting integrated, patient and family-centred models of care, nurses can implement targeted interventions that address caregiver needs while reinforcing care continuity. Furthermore, investing in caregiver well-being should be regarded not only as an ethical obligation but as a strategic healthcare priority, essential to ensuring high-quality and sustainable palliative care services. A systemic commitment to caregiver support, grounded in evidence-based nursing practice and policy reform, is vital to promoting dignity, resilience, and compassion within caregivers in palliative care systems.
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