Caring for the Informal Caregivers: Systematic Review of Unmet Needs in Palliative Care

ABSTRACT

Aim

This review aims to describe the literature on the unmet needs of family/informal caregivers of patients in palliative care and the tools used to assess them.

Research Questions

What are the unmet needs of informal caregivers of palliative care patients? Which are the tools used to assess them?

Design

Systematic review reported according to the PRISMA guidelines.

Methods

A comprehensive literature search was performed in Cochrane Library, PubMed, Embase, CINAHL, Scopus and Web of Science databases. Additional searches included reference lists of relevant articles and Google Scholar. Study methodological quality was evaluated using the Joanna Briggs Institute tools, and the certainty of evidence was assessed according to the Oxford Centre for Evidence‐Based Medicine. Article selection, quality assessment, and risk of bias evaluation were conducted independently by two reviewers.

Results

The review included 17 studies conducted in different palliative care settings—hospice, home care, hospital wards—mostly cross‐sectional (58.9%) and with high methodological quality (96%, range 80%–100%). The unmet needs of caregivers persisted across settings and mainly concerned information, practical support and emotional well‐being. Additionally, the limited number of validated assessment tools specific for palliative care caregivers was highlighted.

Conclusion

Crucial unmet needs of caregivers of patients in palliative care were identified, which warrant targeted interventions to improve the well‐being of caregivers and patients in palliative care. The impact of innovative digital health tools and remote systems to support caregivers should be explored.

1. Introduction

Palliative care (PC) for patients with advanced, chronic, progressive diseases—whether at home or in hospice—presents significant challenges not only for the patients but also for their caregivers. PC adopts a biopsychosocial perspective, emphasising the crucial role of family caregivers in supporting patients both at home and in hospice (Chan 2018).

Patients receiving PC often face fluctuating symptoms that can cause stress for their family caregivers. Caregivers may experience a range of emotions, including anger, despair, loneliness, fear, anxiety and depression, which can negatively impact their quality of life across physiological, psychological, social and economic dimensions (Chang et al. 2010). The interconnection between caregiver challenges and patient well‐being is a crucial aspect of PC (Cheng et al. 2023; Dierickx et al. 2022). Addressing these needs through targeted interventions could significantly enhance the quality of life for family caregivers while also improving the overall well‐being of the patients.

Kreyer et al. (2024) propose a classification of caregivers' needs in two main dimensions: enabling domains and direct support needs. Enabling domains refer to resources and competencies needed to care for the patient effectively, including access to information, communication with professionals and care coordination. Direct support needs, instead, focus on the caregiver's own well‐being, such as emotional burden, psychological distress and the need for social and respite support. This framework allows for a nuanced and structured analysis of caregivers' experiences across different PC settings.

2. Background

The international literature identifies a wide range of unmet needs among caregivers, spanning psychological, physical and healthcare service domains (Stajduhar et al. 2008). Key unmet needs include informational, technical and emotional support. A lack of information often leads to uncertainties and concerns, insufficient technical support increases the practical burden of caregiving, and inadequate emotional support can contribute to feelings of isolation and emotional exhaustion (D'Astous et al. 2019). These challenges place significant strain on caregivers, manifesting as stress and difficulties in managing daily responsibilities. For example, limited information may result in improper management of patient symptoms, intensifying pressure on caregivers. Insufficient technical support complicates essential daily tasks, while a lack of emotional support amplifies isolation and stress, decreasing psychological well‐being.

Such burdens have been linked to anxiety, depression and even post‐traumatic growth, suggesting the need for deeper exploration of the relationship between psychological disorders and unmet needs (Perpiñá‐Galvañ et al. 2019). Reblin et al. (2023) highlighted the significant impact of PC on anxiety, depression and psychological distress, emphasising the need for further research on its effects on both caregivers and patients. Zavagli et al. (2022) also underscored the heavy burden of caregiving for oncology patients receiving home PC. Identifying caregivers' specific unmet needs is therefore essential for enhancing support and improving the overall quality of PC.

The literature also emphasises the importance of reliable needs assessment tools. As highlighted by Chien et al. (2023) there are notable gaps in the tools currently used to assess caregiver needs, with a call for more rigorous psychometric testing to ensure their effectiveness.

Recent evidence confirms these limitations: the framework by Kreyer et al. (2024) emphasises the distinction between enabling factors and direct support needs, highlighting the complexity of caregiver burden. In parallel, WHO (2021) and Wang et al. (2023) have called for digital and scalable interventions to support caregivers globally.

While existing reviews provide valuable insights into the unmet needs of caregivers in PC, the body of literature remains fragmented. For example, a systematic review by Wang et al. (2018) specifically focused on the unmet needs of oncology patients with advanced cancer in PC, as well as the needs of their caregivers. This study laid the groundwork for understanding these issues in the oncology context. Similarly, Mathews and Johnston (2017), conducted a rapid review examining the perspectives of patients with chronic obstructive pulmonary disease (COPD) in palliative and end‐of‐life care, alongside their caregivers, highlighting unmet needs and unique viewpoints from the caregiving side. A recent study on young and middle‐aged Chinese adults with advanced cancer confirmed diverse unmet needs in PC, including psychological, social and informational support (Wen et al. 2025).

However, there remains a need for a more comprehensive and updated synthesis that spans a broader spectrum of diseases and care settings, integrates post‐pandemic experiences, and employs validated methodological frameworks. Such a review would help unify the fragmented literature and provide a more holistic understanding of caregivers' unmet needs across different patient populations and severity levels. Although prior studies focus on specific conditions such as cancer or COPD, this disease‐specific approach may limit the generalizability and applicability of findings across broader caregiver populations. It is therefore important to clarify that the problem lies not only in the fragmentation of the literature but also in its narrow focus, which prevents a unified vision of caregiver needs in PC. A broader analysis—spanning multiple conditions and settings—would indeed be more informative, as it allows for the identification of common unmet needs, regardless of the underlying diagnosis.

3. Purpose

The aim of this systematic review is to describe the existing literature on the unmet needs of family/informal caregivers of patients receiving PC (at home, in hospices and in PC wards), as well as the tools used to assess these needs. The research questions are: What are the unmet needs of informal caregivers of PC patients? Which are the tools used to assess them?

The review was guided by the following adaptation of the PICO(S) framework:

• Population (P): Informal/family caregivers of patients receiving PC.

• Intervention (I): Needs assessment tools or evaluations.

• Comparison (C): Not applicable.

• Outcome (O): Types and frequency of unmet needs; presence and characteristics of assessment tools.

• Study design (S): Primary studies with qualitative, quantitative, or mixed‐methods design.

4. Methods

4.1. Review Methodology

This systematic review was reported following the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) guidelines (Page et al. 2021). The PRISMA guidelines provide a structured approach to ensure comprehensive and clear reporting, enhancing the reproducibility and credibility of systematic reviews. The protocol of this systematic review was registered in the International prospective register of systematic reviews (PROSPERO) of the National Institute of Health Research (https://www.crd.york.ac.uk/prospero/) with protocol registration number: CRD42024547360

4.2. Search Strategy

A comprehensive and systematic bibliographic search was conducted in July 2024 across several scientific databases, including PubMed, Cochrane Library, CINAHL (Cumulative Index to Nursing and Allied Health Literature), Scopus, Embase and Web of Science. To ensure a focused yet comprehensive search, we used a combination of text words and thesaurus terms where appropriate, applying keywords like ‘unmet need’, ‘caregiver’, ‘family’ and ‘PC’, along with their variations, combined strategically with Boolean operators. Additionally, a manual search was conducted by reviewing the references of relevant documents and screening the first 10 pages of Google Scholar (approximately 100 records per keyword combination) to retrieve supplementary records. The search covered studies from January 1990 to May 2025, reflecting over two decades of evolving practices and tools. The starting year 1990 was chosen as it marked the beginning of broader international discourse on informal caregiving in PC. The full search algorithms are available in File S1.

In the initial screening phase, two reviewers (MU and MS) independently assessed all titles and abstracts retrieved from the database searches. Using Rayyan software (https://rayyan.com/), duplicates and non‐relevant records were systematically removed. In case of disagreement, a third expert reviewer (MP) was consulted to reach consensus. For studies deemed potentially relevant after the initial screening, full‐text articles were obtained and rigorously assessed independently by the reviewers (MU and MS) according to predefined eligibility criteria. In instances where consensus was challenging, discussions were initiated between the primary reviewers. If agreement could not be reached, the third reviewer (MP), who was previously uninvolved, was brought in to provide an impartial decision.

4.3. Inclusion Criteria

The inclusion criteria were primary studies with quantitative or mixed‐methods design that explored the unmet needs of caregivers of patients receiving PC at home, in hospices, or in PC hospital wards. Studies investigating mixed populations were included if caregiver‐specific findings could be separated and reported. Additionally, studies describing interventions or programs to support caregivers in PC were included. Only articles published in English, Italian, or Spanish, with an available abstract and published in 1990 or later, were considered.

The exclusion criteria were secondary studies (e.g., reviews), editorials and opinion articles. Studies that did not examine the unmet needs of caregivers of patients in PC were excluded, as were studies involving mixed populations where caregivers‐specific data could not be isolated. Records published before 1990 and studies without accessible abstract or full texts through libraries or subscriptions were also excluded.

The inclusion and exclusion criteria were developed and described in line with the principles of the PICO(S) framework, to ensure clarity and methodological transparency. Specifically, the Population (P) considered included informal or family caregivers of patients receiving PC, either at home, in hospice, or in hospital wards. The Intervention (I) referred to any type of assessment or evaluation aimed at identifying the caregivers' unmet needs. No formal Comparison (C) was required, as the nature of the included studies was predominantly descriptive or exploratory. The Outcomes (O) of interest concerned the types and frequency of reported unmet needs, as well as the presence, use and characteristics of tools designed to assess them. The Study design (S) included primary studies using qualitative, quantitative, or mixed methods. This structured approach helped ensure that the inclusion criteria were comprehensive and consistent with the aim of the review.

Study selection was performed in three phases—screening, eligibility and inclusion—by two independent reviewers (MU and MS). Titles and abstracts were initially screened, followed by full‐text assessment for eligibility based on predefined criteria. Discrepancies were resolved by discussion or through consultation with a third reviewer (MP). This procedure ensured a reliable and transparent appraisal of evidence quality.

4.4. Evaluation of Risk of Bias and Methodological Quality of Studies

Critical Appraisal Tools (Moola et al. 2020). These tools, widely recognised for their precision in evaluating studies with various research designs, provided a structured framework for determining the reliability and applicability of each study. Study quality classification followed the approach used in the meta‐analysis by Pimsen et al. (2022), where studies with a JBI score above 70% were classified as high quality, those scoring between 69.9% and 50% as medium quality, and those scoring below 50% as low quality. For studies employing mixed methods, we applied the Mixed Methods Appraisal Tool (MMAT) v.2018 (Hong et al. 2018) (File S1). The risk of bias and methodological quality of the included articles were initially evaluated by two reviewers (MU and MS), with any conflicts resolved by a third reviewer (MP).

4.5. Assessment of Evidence Certainty

The robustness of the evidence was assessed using the Oxford Centre for Evidence‐Based Medicine (OCEBM) framework (Howick et al. 2011). This framework classifies research into five levels of evidence based on study design and quality. Systematic reviews of randomised controlled trials (RCTs) and high‐quality individual trials are placed at the highest level of evidence. In contrast, studies based on expert consensus or lacking empirical data are categorised at the lowest level. Research at intermediate levels includes less rigorous RCTs, cohort studies, case series and case–control studies, which are classified into the second, third and fourth levels, respectively. Studies may be reclassified based on factors like methodological rigour, precision of findings, and relevance to the topic, leading to adjustments in their evidence level either upward or downward. The certainty of evidence was independently rated by two reviewers (MU and MS); discordances were resolved through discussion with a third expert reviewer (MP).

4.6. Data Extraction

Data from selected articles were extracted and organised into tables, including the following information: author(s), year of publication, country, study design, populations, type of intervention, assessment of quality/bias, key findings. Data extraction was carried out independently and in duplicate by two reviewers (MU and MS) using a standardised extraction form, which was piloted on a small sample of studies to ensure clarity and consistency before full application. In case of missing or unclear data, the corresponding authors were contacted to obtain or confirm the required information.

The results were presented in a structured table that included the following columns: study ID (author, year), country, study design, setting (home, hospice, PC ward), caregiver sample characteristics, unmet needs identified, tool(s) used to assess needs and summary of key findings. This tabular structure was designed to ensure comparability across studies and to support later thematic classification.

4.7. Data Synthesis

The primary results from the studies included were classified using the framework proposed by Kreyer et al. (2024), which divides caregivers' needs into two main areas, enabling domains and direct support needs. Enabling domains focus on the help needed by caregivers to effectively manage patient care, such as access to medical information, understanding the patient's illness trajectory, symptom and medication management and legal and practical assistance. Direct support needs regard health and well‐being of caregivers, emphasising emotional and psychological aspects, emotional burden and the need for respite.

5. Results

5.1. Inclusion and Evaluation Process

A total of 3498 articles were identified, 3311 of which came from electronic database searches (611 from PubMed, 69 from Cochrane Library, 581 from CINAHL, 650 from Scopus, 502 from Web of Science, 898 from Embase) and 187 from Google Scholar. After removing 2234 duplicate articles, 1264 articles remained, and their titles were screened for eligibility by reading the abstract. Of these, 1120 records were judged not relevant for various reasons, leaving 144 for full text evaluation. After assessing these, 127 studies were excluded for not meeting the inclusion criteria, resulting in 17 articles being included in the final review (Figure 1).

FIGURE 1.

PRISMA flow diagram outlining the article selection process from identification to inclusion. Adapted from: Page et al. (2021).

5.2. Characteristics of Studies

All included records (n = 17) reported primary studies, mainly conducted in Western countries (n = 14; 82.4%). Study designs were cross‐sectional (n = 10; 58.9%), mixed methods (n = 3; 17.6%), qualitative (n = 3; 17.6%) and randomised controlled trials (n = 1, 5.9%). The publication year ranges from 1999 to 2024 (File S2).

Eleven studies were conducted in an individual PC environment, including seven in home care, two in hospital wards, one in hospice and one in a PC day centre. The remaining six studies explored two settings together: hospice and PC wards (n = 3 studies), PC wards and home care (n = 2 studies), hospice and home care (n = 1 study). The population studied includes cancer patients, patients at the end of life and patients with Parkinson's disease, all included in PC pathways. Only caregiver outcomes were reported here. The included studies involved a total sample of 3173 caregivers (Table 1).

TABLE 1.

Characteristics of included studies.

Study number	Author (year)	Country	Study design	Setting, population	Objective	Sample	Need assessment tools	Key findings: unmet needs
1	Aubin et al. (2017)	Canada	Randomised controlled trial	PC wards Lung cancer patients	To assess the effectiveness of an intervention to improve supportive care for family caregivers	Patients (n = 120) Family caregivers (n = 120)	Hospital Anxiety and Depression Scale (HADS) Psychological Distress Index (PDQHS)	Significant high levels of anxiety and depression, lack of clear and timely information regarding the patient's illness
2	Bijnsdorp et al. (2020)	Netherlands	Mixed method	Home End of life patients	To identify profiles of family caregivers providing care to patients at the end of life at home	Family caregivers (n = 41)	Carer Support Needs Assessment Tool (CSNAT)	Four caregiver profiles with different needs: recognition and a dedicated contact person, supportive relationships, information and practical support and respite
3	Chen et al. (2016)	Taiwan	Cross‐sectional	Home/PC wards Advanced lung cancer patients	To identify unmet supportive care needs and related factors in caregivers	Caregivers (n = 166)	SCNS‐P&C NRS, SSS HADS	Unmet needs: information, health care professional/service needs and daily living needs. Significant factors include patient anxiety and caregiver fatigue/sleep disturbance
4	Cheng et al. (2023)	Hong Kong	Cross‐sectional	Hospice/PC wards Cancer patients	To explore caregiving self‐efficacy mediation between unmet support needs and HRQOL in family caregivers	Family caregivers (n = 125)	Survey questionnaire	Caregiving self‐efficacy mediates the relationship between unmet support needs and mental health‐related quality of life (HRQOL) among family caregivers
5	Chua et al. (2020)	Singapore	Cross‐sectional survey	Hospice/PC wards Advanced cancer patients	To explore palliative care needs in patients and their family caregivers	Patients (n = 599) Family caregivers (n = 599)	Comprehensive Needs Assessment Tool CNAT (patients) CNAT‐C (Fcs)	High unmet need for information and practical support. Caregivers had higher overall needs than patients. Younger age, inpatient setting and male gender were linked to higher needs
6	Dierickx et al. (2022)	Belgium	Cross‐sectional survey	PC day centres Advanced cancer patients	To evaluate palliative day care centres from a user perspective	Patients (n = 86) Family caregivers (n = 63)	EORTC QLQ‐30 EORTC QLQ‐SWB32 SPARC EORTC SHQ‐22	Unmet needs: emotional and psychological support, guidance in navigating healthcare and more respite and practical assistance
7	DuBenske et al. (2008)	USA	Cross‐sectional study	Home/Hospice Advanced cancer patients.	To explore the needs of informal caregivers	Informal caregivers (n = 183)	Cancer Caregiver Needs Checklist	Unmet needs: information on practical issue‐including legal/financial ones, on dying process and on practical post‐death issues
8	Ewing et al. (2013)	UK	Qualitative study	Home End‐of‐life patients	Develop a tool to assess the support needs of caregivers for end‐of‐life care at home	Patients (n = 75), Family caregivers (n = 75)	Carer Support Needs Assessment Tool (CSNAT)	Unmet needs: support for symptom management, psychological support for caregivers
9	Gallagher and Krawczyk (2013)	Canada	Cross‐sectional survey	Hospice/PC ward End‐of‐life patients	To assess perceived level of satisfaction with end‐of‐life care, focusing on the last 48 h of life	Bereaved family members (n = 90)	After‐Death Bereaved Family Member Interview (ADBFMI)	Unmet needs: information on patient's condition, dying process, symptom management and emotional support
10	Harding et al. (2012)	UK	Qualitative study	Home Cancer patients	Generate evidence to develop a psycho‐educational intervention based on the experiences of informal caregivers	Family caregivers (n = 20)	Semi‐structured interviews Interview guide developed for Palliative Care	Unmet needs: preparation for the role, clear information about the patient's condition, emotional support related to disease progression, difficulties in managing time, health and financial issues
11	Lennaerts‐Kats et al. (2022)	The Netherlands	Mixed‐methods case study	Home Advanced stage Parkinson's end‐of‐life patients	Exploring the needs of terminally ill palliative care patients and their families	Patients (n = 10) Family caregivers (n = 8)	Data were collected by semi‐structured face‐to‐face interviews	Unmet needs: fatigue and lack of time to discuss needs with clinicians
12	Norinder et al. (2021)	Sweden	Cross‐sectional survey	Home End of life patients	To explore associations between family caregivers' support needs and quality of life when caring for a spouse receiving specialised palliative home care	Family caregivers (n = 114)	Carer Support Needs Assessment Tool (CSNAT). Developed for Palliative Care	Unmet needs: information on what to expect in the future; lack of time for oneself; emotional support, practical support
13	Nysaeter et al. (2024)	Norway	Qualitative study	Home End of life patients	To explore family caregivers' preferences for support over time while caring for a family member with cancer in the late palliative phase at home	Family caregivers (n = 11)	Conceptual model for mapping family caregiver needs. Developed for Cancer Patients, Palliative Care	Unmet needs: emotional support, respite care
14	Payne et al. (1999)	UK	Cross‐sectional survey	Home End of life patients	To identify support needs perceived by family caregivers of cancer patients receiving palliative care at home	Family caregivers (n = 39)	General Health Questionnaire (GHQ). Developed for Cancer Patients, Palliative Care	Caregivers reported psychological distress, strain related to caregiving, life restrictions, emotional distress and limited support
15	Reblin et al. (2023)	USA	Cross‐sectional survey	Hospice Cancer patients	Characterise daily burden and unmet needs of hospice cancer caregivers	Hospice caregivers (n = 40)	Longitudinal prospective questionnaire data. Developed for Palliative Care	Unmet needs of caregivers exacerbated by stress and lack of support
16	Seekatz et al. (2017)	Germany	Mixed‐methods	PC wards Cancer patients	To evaluate unmet needs of caregivers of patients with glioblastoma and brain metastases	Patients (n = 79) Caregivers (n = 46)	Questionnaires and interviews Developed for Cancer Patients	High levels of stress due to fatigue and lack of sleep; significant lack of information about the illness
17	Weber et al. (2012)	Germany	Cross‐sectional survey	PC wards/Home Mostly cancer patients	To explore the needs and personal experiences of relatives at the end of life, and to detect differences for various care settings	Relatives (n = 1337)	Written survey Developed for Palliative Care	High rates of unmet needs for emotional support and information

Abbreviations: ADBFMI, After‐Death Bereaved Family Member Interview; CNAT, Comprehensive Needs Assessment Tool; CNAT‐C, Comprehensive Needs Assessment Tool for Caregivers; CSNAT, Carer Support Needs Assessment Tool; EORTC QLQ‐30, European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire; EORTC QLQ‐SWB32, European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Spiritual Well‐Being; EORTC SHQ‐22, European Organisation for Research and Treatment of Cancer Satisfaction with Hospital Questionnaire; Fcs, family caregivers; HADS, Hospital Anxiety and Depression Scale; HRQOL, Health‐Related Quality of Life; KPS, Karnofsky Performance Status; NRS, Numeric Rating Scale; PC, palliative care; PDQHS, Psychological Distress Index; SCNS‐P&C, Supportive Care Needs Survey‐Partners & Caregivers; SE, self‐efficacy; SPARC, Sheffield Profile for Assessment and Referral for Care; SPC, Specialised Palliative Care; SSS, Social Support Scale.

Given that the data analysed were self‐reported and came from heterogeneous study designs and populations, a standardised approach was adopted to ensure consistency. Specifically, two reviewers independently extracted and coded the reported unmet needs according to the theoretical framework by Kreyer et al. (2024). Disagreements were discussed and resolved through consensus, and when necessary, a third reviewer was consulted. This process was designed to reduce subjectivity and enhance the reliability of comparisons across studies.

Moreover, to identify which needs were ‘critical’ or ‘urgent’, two main criteria were applied: the frequency of the need across the included studies, and the level of emphasis attributed to each need by the original study authors in their results or discussion. This methodological step allowed a structured and reproducible classification of needs according to their perceived impact on caregivers. The use of standardised tables (Tables 1 and 2) allowed for consistent comparison of individual study results and thematic synthesis. Table 1 presents detailed characteristics of each included study, while Table 2 categorises and summarises the main caregiver unmet needs according to the theoretical framework.

TABLE 2.

Categorization of results.

	Caregivers' unmet needs	Source studies a	Unmet needs considered urgent/critical
‍Enabling domains	Information	1, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 16, 17	Access to clear and timely information about the illness, dying process and caregiving role
	Healthcare professional/service support	3, 5, 6, 7, 9, 10, 11, 16	Dedicated contact points and structured communication with healthcare providers to reduce caregiver stress
	Daily living requirements	3, 6	Structured resources to manage caregiving tasks and household responsibilities
	Practical assistance	6, 7, 10, 11, 12, 15	Help with physically demanding care tasks and access to support systems
	Financial/legal support	7, 10, 16, 17	Financial counselling and legal assistance tailored to caregiving circumstances
‍Direct support needs	Emotional and psychological support	1, 6, 8, 10, 11, 12, 13, 14, 15, 16, 17	Assistance to manage anxiety, stress and depression related to caregiving and emotional well‐being strategies
	Respite care	2, 6, 10,11,13	Access to structured breaks and temporary caregiving relief to address physical and emotional exhaustion

^a The source studies are referred to according to the study number (Table 1, first column).

Overall, the quality of the included studies scored an average of 84% (range 80%–100%) according to the JBI Critical Appraisal Checklist, indicating high reliability and methodological robustness (Pimsen et al. 2022). The evidence grade (OCEBM), ranging from 2 to 5, varied based on the study design (File S1). The studies conducted using a mixed method design were also evaluated using the Mixed Methods Appraisal Tool (MMAT) version 2018, which further substantiated the methodological quality assessment.

5.3. Unmet Family/Informal Caregiver Needs

The unmet caregiver needs identified in all studies were classified into enabling domains and direct support needs (Kreyer et al. 2024). Enabling domains include access to medical information, understanding illness progression, symptom management and legal or practical assistance. Direct support needs focus on caregivers' health, emotional burden and respite. This classification was guided by the theoretical framework proposed by Kreyer et al. (2024), which was used as a deductive lens for structuring both the data extraction and thematic synthesis. These are detailed in the following paragraphs and summarised in Table 2.

5.3.1. Enabling Domains

Fourteen out of the 17 studies reported unmet needs within the enabling domains (Aubin et al. 2017; Chen et al. 2016; Cheng et al. 2023; Chua et al. 2020; Dierickx et al. 2022; DuBenske et al. 2008; Ewing et al. 2013; Gallagher and Krawczyk 2013; Harding et al. 2012; Lennaerts‐Kats et al. 2022; Norinder et al. 2021; Reblin et al. 2023; Seekatz et al. 2017; Weber et al. 2012). These studies explored diverse settings and populations, highlighting the varied experiences of caregivers and the importance of tailored interventions.

Lack of information is a key challenge for caregivers, often hindering their ability to provide adequate care. It was identified as the need for accurate and timely information regarding the disease progression, treatment options and care plans (Chen et al. 2016; Chua et al. 2020). Information that equips caregivers to manage the high symptomatic burden of glioblastoma patients was deemed critical (Seekatz et al. 2017). Informational gaps were noted throughout the care continuum, spanning diagnosis to end‐of‐life care, underlining the necessity of structured communication strategies (DuBenske et al. 2008), During the final stages of life, caregivers require specific guidance on the dying process, symptom management and practical concerns, highlighting the pressing need for targeted informational support during this period (DuBenske et al. 2008; Gallagher and Krawczyk 2013).

Many studies reported a lack of support from healthcare providers. Caregivers expressed the need for a dedicated point of contact to navigate the healthcare system, which could reduce stress and enhance their caregiving capacity (Dierickx et al. 2022). Lennaerts‐Kats et al. (2022) emphasised that emotional and logistical needs were often inadequately addressed by healthcare professionals during consultations. Moreover, Reblin et al. (2023) highlighted insufficient family and community support, further exacerbating caregivers' burdens and emphasising the need for robust service networks.

Recognition of caregivers' roles and practical assistance in navigating the healthcare system were essential. Caregivers often felt unsupported in addressing emotional and practical challenges (Bijnsdorp et al. 2020; Dierickx et al. 2022).

Caregivers highlighted an unmet need for support in managing daily living requirements, such as household chores, meal preparation and mobility assistance for patients. Chen et al. (2016) reported that many caregivers struggled with the physical demands of caregiving tasks, while Chua et al. (2020) emphasised that structured resources for daily living could significantly alleviate their burden.

Practical assistance for caregivers, as observed in the study by Norinder et al. (2021), is of considerable importance. Caregivers expressed also the need for practical assistance with physically and emotionally demanding caregiving responsibilities, including mobility and personal care and household management (Chen et al. 2016; Chua et al. 2020). Furthermore, the absence of a dedicated point of contact for ongoing support and guidance on treatment options was identified as a major gap, which could greatly reduce caregivers' stress and improve their ability to provide care (Dierickx et al. 2022).

A significant issue for caregivers was the lack of financial and legal support (Gallagher and Krawczyk 2013; Harding et al. 2012; Seekatz et al. 2017; Weber et al. 2012) with many reporting a considerable financial burden, particularly when caring for patients with high symptomatic needs. Seekatz et al. (2017), for instance, highlighted the importance of providing financial counselling tailored to caregivers' specific circumstances. Additionally, Weber et al. (2012) identified that inequities in resource access were often exacerbated by the absence of legal support, stressing the importance of comprehensive systems to address both financial and legal challenges faced by caregivers.

5.3.2. Direct Support Needs

Direct support needs including that for emotional and psychological support, and respite care, both essential for helping caregivers manage their challenging role, have been reported in twelve studies (Aubin et al. 2017; Bijnsdorp et al. 2020; Cheng et al. 2023; Chua et al. 2020; Dierickx et al. 2022; Ewing et al. 2013; Harding et al. 2012; Norinder et al. 2021; Nysaeter et al. 2024; Payne et al. 1999; Reblin et al. 2023; Weber et al. 2012).

Lack of emotional and psychological support was commonly reported, with caregivers expressing the need for assistance in managing high levels of stress, anxiety and depression, which were often exacerbated by the continuous demands of caregiving and the lack of clear and timely information about the patient's illness. Aubin et al. (2017) and Ewing et al. (2013) found that caregivers of lung cancer patients faced significant anxiety and depression, highlighting the need for emotional support alongside clear communication. Similarly, Payne et al. (1999) and Reblin et al. (2023) emphasised that psychological and emotional needs, including stress management, were significant for caregivers of PC patients with cancer, underlining the importance of targeted psychological support. Dierickx et al. (2022) identified unmet emotional and psychological support needs in caregivers in Belgium, despite the resources provided by PC centres, indicating that more comprehensive support is required. Chua et al. (2020) highlighted significant unmet needs within the domain of emotional and psychological support. Moreover, Cheng et al. (2023) found that caregivers with low self‐efficacy were more likely to experience a negative impact on their mental health due to unmet support needs, suggesting that strategies to build caregivers' confidence and coping abilities are crucial for improving their quality of life. The lack of clear and timely information about the patient's condition has also been a significant issue for caregivers, further aggravating their emotional distress (Norinder et al. 2021).

Unmet need for respite care was another significant issue. Caregiving for a family member in PC is physically and emotionally exhausting, and caregivers often lack the time or resources to take breaks. The need for respite assistance was emphasised, with many caregivers seeking support that would allow them to rest and recharge (Bijnsdorp et al. 2020; Dierickx et al. 2022; Nysaeter et al. 2024). Bijnsdorp et al. (2020) specifically found that caregivers providing home care for terminally ill patients frequently require respite opportunities and access to dedicated support staff to alleviate the caregiving burden.

5.4. A Reflection on the Critical Unmet Needs of Family Caregivers

The analysis of the unmet needs of family caregivers supporting patients in PC highlights that some categories of needs are perceived as more urgent and critical than others (Table 2). Among these, emotional and psychological needs consistently emerge as the most critical, as they directly affect the caregiver's ability to cope with stress, anxiety and the emotional challenges associated with caregiving. Informational support needs also hold a high position, given the urgency with which caregivers must receive clear and timely information about the illness, the dying process and their role. Practical support needs, such as assistance with daily tasks, are frequently mentioned as essential to prevent burnout and ensure that caregivers can effectively manage the demands of caregiving. Although legal/financial assistance needs and respite care needs are important, they are generally considered less urgent in comparison, though still fundamental for the caregiver's long‐term well‐being. Relational support needs and role management needs, while less explored, are also critical for promoting caregivers' self‐efficacy and improving their overall quality of life. Understanding these distinctions helps to prioritise intervention strategies, ensuring that the most urgent needs are addressed first. By distinguishing between urgent and critical needs, healthcare professionals and policymakers can develop more targeted support systems that truly respond to caregivers' needs and enhance their ability to care for patients in PC.

5.5. Tools Used to Assess Unmet Needs

Several tools used to investigate the caregiver's unmet needs were identified in the literature. Only a few of them were specifically designed to identify the needs of family caregivers in PC settings, such as the Carer Support Needs Assessment Tool—CSNAT (Ewing et al. 2013), CSNAT‐I (Norinder et al. 2021), Numerical Rating Scale (NRS) (Chen et al. 2016). The CSNAT is a concise yet comprehensive questionnaire focusing on key areas where caregivers may need assistance, useful for both research and clinical practice. It can effectively identify practical and direct support needs, such as daily management of patient symptoms, access to medical information and psychological support, but has limitations in addressing more specific challenges, such as mobility and home management. CSNAT demonstrates high internal consistency and good content validity, though showing weaknesses in longitudinal validity and handling missing data (Ewing et al. 2013). Bijnsdorp et al. (2020), for instance, used the CSNAT to identify the profiles of family caregivers providing care to end‐of‐life patients at home in the Netherlands. The CSNAT‐I (Norinder et al. 2021) is an extension of this tool, designed to capture even more specific caregiver needs across various contexts.

Some other tools were designed to identify the needs of family caregivers of patients with cancer, such as the Carer Needs Assessment Tool—CNAT (Shim et al. 2011) and the Cancer Caregiver Needs Checklist (Cheng et al. 2023). The CNAT includes 59 items across seven factors: information and education, psychological problems, healthcare staff, physical symptoms, hospital facilities and services, social and religious/spiritual support and practical support. Each item is rated on a 4‐point scale according to the level of need. The Carer Needs Assessment Tool—Caregiver (CNAT‐C) (Chua et al. 2020) provides a broad evaluation, addressing informational, psychological, practical and spiritual support needs, including details on the quality of the relationship with healthcare personnel. Chua et al. (2020) utilized the CNAT‐C with family caregivers of patients with advanced solid cancer in Singapore, finding high unmet needs in the domains of information and practical support. The Cancer Caregiver Needs Checklist identifies specific caregiver needs at different stages of the cancer care journey, in particular assessing information during critical phases. Cheng et al. (2023) used it to determine the mediating role of perceived caregiving self‐efficacy between unmet support needs and mental health‐related quality of life in family caregivers of PC cancer patients in Hong Kong.

Other tools used to collect unmet needs of caregivers were developed to assess specific constructs, with a less comprehensive scope as they focus on individual need domains, as follows.

Regarding emotional and psychological support, the Distress Assessment and Response Tool (DART) was developed to specifically assess the supportive needs, emotional burden and symptomatic distress of patients with cancer, as well as the needs of their caregivers (Seekatz et al. 2017). However, further research is required to define its specific applications. Tools like the Hospital Anxiety and Depression Scale (HADS) and the Psychological Distress Index (PDI), which are valid, reliable and widely used measures of psychological symptoms (Al Aseri et al. 2015), have been used to assess anxiety, depression and stress among caregivers (Aubin et al. 2017). However, the HADS has limitations in specific populations, such as older adults, and is more diagnostic than preventive, with limited capacity for immediate intervention. Additionally, the PDI, is notable for its ability to evaluate distress related to patient dignity.

Regarding spiritual support, the EORTC QLQ‐SWB32 and EORTC QLQ‐30 assess the quality of life of cancer patients in terms of spiritual well‐being and their connection to religious or existential support systems. EORTC QLQ‐SWB32 focuses on spiritual well‐being and caregivers' connection with religious or existential support systems, demonstrating proven validity in areas such as ‘Relationships with Others’ and ‘Relationship with Self’ (Goyarrola et al. 2023; Vivat et al. 2017). However, its effectiveness is influenced by cultural and religious contexts. Dierickx et al. (2022) utilized these questionnaires to assess the unmet needs of caregivers in palliative day centres in Belgium. Additionally, spiritual needs are also addressed by the After‐Death Bereaved Family Member Interview (ADBFMI), which was developed to assess family members' satisfaction with end‐of‐life care (Gallagher and Krawczyk 2013).

Detailed descriptions of commonly used tools to assess unmet needs are presented in Table 3 along with their main psychometric properties.

TABLE 3.

Assessment tools of caregivers' unmet needs.

Tool	Target	Unmet needs covered	Type of tool	Psychometric properties
ADBFMI Gallagher and Krawczyk (2013)	Caregiver	Satisfaction with end‐of‐life care Specific caregiver needs throughout cancer care journey	Structured Interview 38‐item Questionnaire 0–10 Numeric Rating Scale (10 items), 4‐point Likert scale (28 items), No self‐report, structured Developed for cancer patients	CVI = 0.88 Cronbach's α = 0.58–0.87
Cancer Caregiver Needs Checklist DuBenske et al. (2008)	Caregiver	Specific caregiver needs throughout cancer care journey	104‐item Checklist NRS (0–10) (10 items) Self‐report, structured Developed for cancer patients in Palliative Care	Index of information needs: psychometric test not appropriate
CNAT Chua et al. (2020)	Patient/caregiver	Information and education Psychological aspects Physical symptoms Hospital facilities and services Social and religious/spiritual support Practical support	59‐item Questionnaire 4‐point Likert scale Self‐report, structured Developed for cancer patients in Palliative Care	CVI = 0.91 Cronbach's α = 0.94
CNAT—C Chua et al. (2020)	Caregiver	Support needs and structured follow‐up actions	41‐item Questionnaire 4‐point Likert scale Self‐report, structured Developed for cancer patients in Palliative Care	CVI = 0.90 Cronbach's α = 0.93
CSNAT Bijnsdorp et al. (2020) Ewing et al. (2013) Norinder et al. (2021)	Caregiver	Key areas of caregiver support needs	19‐item Questionnaire 4‐point Likert scale Self‐report, structured Developed for Palliative Care	CVI = 0.89 Cronbach's α = 0.91
DART Seekatz et al. (2017)	Patient/caregiver	Psychological aspects Practical support	10‐item Questionnaire 11‐point Likert scale Self‐report, structured Developed for cancer patients	CVI = 0.87 Cronbach's α = 0.88
EORTC QLQ‐30 Dierickx et al. (2022)	Caregiver	Psychological aspects Physical symptoms Practical support	30‐item Questionnaire 4‐point Likert scale Self‐report, structured Developed for cancer patients in Palliative Care	Cronbach's α = 0.85
EORTC QLQ‐SWB32 Dierickx et al. (2022)	Patient/caregiver	Spiritual well‐being Information and education	31‐item Questionnaire 4‐point Likert scale Self‐report, structured Developed for cancer patients in Palliative Care	Cronbach's α = 0.88
HADS Aubin et al. (2017) Chen et al. (2016)	Patient/caregiver	Anxiety and depression Practical support	14‐item Questionnaire 4‐point Likert scale Self‐report, structured	Cronbach's α = 0.92
PDI Aubin et al. (2017)	Patient/caregiver	Psychological distress Psychological aspects Physical symptoms	20‐item Questionnaire 4‐point Likert scale Self‐report, structured Developed for cancer patients	Cronbach's α = 0.82

Abbreviations: ADBFMI, After‐Death Bereaved Family Member Interview; CFA, Confirmatory Factor Analysis; CNAT, Comprehensive Needs Assessment Tool; CNAT‐C, Comprehensive Needs Assessment Tool for Caregivers; Cronbach's α, Measure of internal consistency; CSNAT, Carer Support Needs Assessment Tool; CVI, Content Validity Index; DART, Distress Assessment and Response Tool; EORTC QLQ‐30, European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire; EORTC QLQ‐SWB32, European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Spiritual Well‐Being; HADS, Hospital Anxiety and Depression Scale; PDI, Psychological Distress Index; RMSEA, Root Mean Square Error of Approximation.

6. Discussion

This systematic review has identified and described the unmet needs of family caregivers of patients in PC, both in hospice/hospital and at home, as well as the tools used to assess them. The primary studies included were mostly conducted in Western countries in the last 25 years using a cross‐sectional descriptive design. They were all judged of high quality according to JBI (Moola et al. 2020; Pimsen et al. 2022). Substantial unmet needs of family caregivers of PC patients were highlighted across a wide range of settings.

These findings directly respond to the aim of the review, which was to describe the unmet needs of informal caregivers in PC and to map the instruments used to assess them across different care settings. In particular, the review addressed the research questions by identifying common patterns of unmet needs across settings, mapping and analysing the main instruments used to assess these needs, and interpreting which needs were considered critical based on their frequency and emphasis in primary studies. These elements were examined using the framework proposed by Kreyer et al. (2024), which structured the classification of unmet needs into enabling domains and direct support needs, ensuring a deductive yet comprehensive analysis.

The unmet needs were classified into ‘enabling domains’ and ‘direct support needs’, in line with Kreyer et al. (2024). A significant finding within enabling domains is the lack of access to timely and accurate information, such as guidance on symptom management, illness trajectory and care navigation. This aligns with previous literature (Halkett et al. 2023) indicating that caregivers often feel unprepared for their role due to inadequate information and experience an overwhelming need for disease‐specific knowledge, especially during terminal stages, to manage distressing symptoms and practical caregiving tasks. These similarities suggest that communication between healthcare providers and caregivers remains a systemic weakness in PC. Among enabling domain, healthcare providers' lack of support was another recurring theme, consistent with previous literature. Specifically, the absence of a dedicated point of contact increase caregivers' stress levels, consistent with Hudson et al. (2020), who found that caregiver well‐being improves when clear access to a case manager or healthcare liaison is available. Moreover, the lack of clear and timely information regarding the patient's condition, as highlighted by Norinder et al. (2021), is a crucial factor in exacerbating the emotional distress of caregivers, emphasising the need to develop more effective communication systems. Together, these findings reinforce the need for a structured, caregiver‐centred approach to PC that prioritises navigational support. At the same time, practical assistance with daily living and physical caregiving tasks, such as meal preparation, household chores and mobility assistance, remains a critical unmet need. This review found that caregivers frequently struggle with the physical demands of their role. Morris et al. (2015) highlighted that practical care support of caregivers was lacking, and support programs failed to provide the resources needed for physically intensive caregiving tasks. These comparisons underline the necessity of integrating structured practical support into PC services, especially for home‐based caregiving. Finally, the financial and legal challenges identified in this review reflect broader systemic inequities noted in the literature. Studies have consistently reported that caregiving often leads to significant financial strain due to lost income, out‐of‐pocket medical expenses, and inadequate reimbursement for caregiving services (Bradley et al. 2022). Similarly, the findings of Seekatz et al. (2017) regarding financial counselling resonate with those of Joshi et al. (2024), who highlighted the importance of financial planning resources for caregivers. Legal challenges, such as the lack of assistance with power of attorney and end‐of‐life legal planning, are less frequently discussed in the literature but remain a critical unmet need identified in both this review and studies such as Close et al. (2021). These findings underscore the urgent need for targeted interventions, such as financial counselling and legal support, to mitigate inequities and alleviate the socioeconomic impact of caregiving.

Among ‘direct support needs, the emotional and psychological support needs of caregivers are extensively documented in the current review and align closely with broader research findings. High levels of stress, anxiety and depression were commonly reported, consistent with studies conducted in cancer populations by Grande et al. (2018) and Cameron et al. (2002). For example, Aubin et al. (2017) identified significant anxiety and depression among caregivers of lung cancer patients, findings that parallel the experiences of caregivers in other terminal illnesses. These studies collectively emphasize that caregivers often prioritize the patient’ needs over their own mental health, leading to burnout and psychological distress (Grande et al. 2018). Interestingly, several studies (Cheng et al. 2023; Bosveld et al. 2024) found that caregivers with higher self‐efficacy experience fewer negative mental health outcomes, highlighting the importance of building caregiver confidence and coping skills. This finding is supported by research from Applebaum and Breitbart (2013) showing the efficacy of psychosocial interventions in enhancing caregivers' resilience. However, the unmet need for emotional support persists despite the availability of PC services (Dierickx et al. 2022), reflecting broader gaps in psychosocial care delivery reported in the literature (Morris et al. 2015). The unmet need for respite care (Bijnsdorp et al. 2020) is another critical issue widely acknowledged in the literature. Respite care allows caregivers to take structured breaks, which is essential for their physical and emotional well‐being (Vandepitte et al. 2016). However, respite services are often inaccessible, insufficient, or underutilised (Castro et al. 2023). These barriers to respite care access highlight systemic failures in recognising and supporting caregivers' needs, further reinforcing calls for policy‐level changes to integrate respite care into standard PC services (Castro et al. 2024).

This review sheds new light on the effectiveness of specific tools to assess and address caregivers' needs. Indeed, assessment tools have proven to be essential resources for identifying and addressing caregivers' needs. Among the most widely used and established tools is the Carer Support Needs Assessment Tool (CSNAT), which identifies practical and psychological support needs but has limitations, such as mobility assessment and handling missing data. Another key tool is the Carer Needs Assessment Tool—Caregiver (CNAT‐C), specifically designed for caregivers of oncology patients, which highlights gaps in informational and practical support (Bijnsdorp et al. 2020; Ewing et al. 2013). Other tools, such as the Distress Assessment and Response Tool (DART) and the Hospital Anxiety and Depression Scale (HADS), are used to assess the emotional impact on caregivers but require further validation. Additionally, instruments like the EORTC QLQ‐SWB32 evaluate spiritual well‐being; however, significant gaps remain in financial and legal support, including issues such as income loss and uncovered healthcare costs (Aubin et al. 2017; Dierickx et al. 2022; Seekatz et al. 2017).

However, despite the available tools, significant gaps remain in certain areas, such as the need for financial and legal support. Financial needs, which can include lost income and out‐of‐pocket costs and legal needs, such as assistance with power of attorney or end‐of‐life planning, are critical areas. Specific tools to assess the economic burden or legal planning of caregivers are underrepresented in the literature and should be developed to address these gaps. Additionally, many existing tools could benefit from further psychometric testing to enhance their effectiveness in different contexts, particularly in addressing diverse cultural and socio‐economic backgrounds. An integrated approach that combines specialised tools for informational, practical, psychological and spiritual needs, along with new tools addressing financial and legal needs, could ensure more comprehensive and targeted support for caregivers. This overview supports the need for the development of new, comprehensive, and validated tools covering overlooked domains such as financial burden and legal support, in line with the objective to map current instruments and their limitations.

6.1. Implications for Practice and Policy

This review highlights the need for a comprehensive caregiver support framework addressing both enabling domains and direct needs. Programs should provide timely information, practical assistance, emotional support and respite services. Healthcare providers must adopt a caregiver‐centred approach, recognising them as key team members and offering necessary resources (Zapata et al. 2023). Family‐centred PC shows promise in meeting these needs (Hudson et al. 2020). Integrating caregiver assessments into routine care can identify unmet needs early, while digital health tools, like apps and telehealth, can enhance information access and support (Castro et al. 2023). Policies should also ensure financial and legal support, reducing systemic inequities and caregiving burdens.

Furthermore, future research should prioritise the development and validation of multidimensional assessment tools that include underexplored areas such as financial strain, legal concerns and role strain. New studies should also investigate the longitudinal impact of caregiving on mental health and resilience, particularly in home care contexts and culturally diverse populations (Pollock and Berge 2018).

From a policy perspective, collaboration between health systems and social services is essential to ensure that caregiver support is not fragmented. Public health strategies should include dedicated caregiver training, financial compensation programs and expanded access to respite services as part of standard PC pathways.

6.2. Strengths and Limitations

A key strength of this review is its synthesis of findings from diverse settings, offering a comprehensive overview of caregivers' unmet needs. However, the heterogeneity of study designs and populations limits the generalizability of the findings. In particular, several studies were conducted in mixed PC settings thus hindering the possibility to identify unmet needs specific for a setting. Moreover, the reliance on published studies may overlook insights from unpublished research or grey literature, which could provide further understanding of caregiver experiences.

7. Conclusion

Caregivers of patients in PC, whether in hospice, hospital, or home settings, face complex challenges. They must manage patients' physical needs while coping with significant emotional burdens, particularly during terminal phases when psychological support is crucial. This review highlights the unmet needs of caregivers, emphasising the necessity of targeted interventions and further research to enhance support. Addressing these needs effectively can improve caregiver well‐being and, in turn, the quality of PC. Future research should explore innovative strategies for identifying and addressing caregivers' needs, considering diverse cultural and social contexts. A personalised approach could help tailor solutions to specific caregiver and patient circumstances, increasing intervention effectiveness. Longitudinal studies are essential for tracking evolving needs and developing adaptive support strategies. Integrating specialised tools addressing informational, practical, psychological and spiritual needs, alongside financial and legal support, can offer comprehensive assistance. Such an approach would provide caregivers with the necessary resources to manage their roles more effectively. Collaboration among researchers, clinicians and policymakers is key to refining care models and ensuring a timely response to caregiver needs. A holistic approach would not only enhance PC but also recognise caregivers as vital to the care system, promoting sustainability and humane care. Additionally, it is crucial to assess intervention effectiveness and explore new methodologies for systematically evaluating caregivers' needs throughout patients' illnesses. Addressing these challenges will improve caregiver well‐being and optimise the overall PC experience. Future research and healthcare policies must continue to advance these efforts to provide more comprehensive, culturally sensitive and sustainable support, aligning with the principles of universal health coverage promoted by the World Health Organization.

Author Contributions

Matteo Usai: conceptualisation, methodology, investigation, data curation, formal analysis, writing original draft, writing review and editing and viewing. Marco Sguanci: conceptualisation, methodology, writing original draft, writing review and editing and viewing. Anna De Benedictis: investigation, data curation, writing review and editing. Michela Piredda: conceptualisation, methodology, formal analysis, writing review and editing, visualisation and supervision. Maria Grazia De Marinis: conceptualisation, supervision and visualisation.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Data S1: nop270343‐sup‐0001‐supinfo.docx.

Data S2: nop270343‐sup‐0002‐Supinfo.docx.

Usai, M. , Sguanci M., De Benedictis A., Piredda M., and De Marinis M. G.. 2025. “Caring for the Informal Caregivers: Systematic Review of Unmet Needs in Palliative Care.” Nursing Open 12, no. 11: e70343. 10.1002/nop2.70343.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.