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Experiences of healthcare professionals providing palliative care in home settings - a scoping review
BMC Palliative Care volume 24, Article number: 83 (2025)
Abstract
Background
The growing preference for home-based end-of-life care accords a dignified death for terminally ill patients. However, for healthcare professionals (HCPs) involved, this caregiving approach is embedded with unique psychosocial, practical and emotional stressors. Without sufficient support, HCPs face higher risks of moral distress, compassion fatigue, vicarious trauma, secondary traumatic stress and burnout—collectively known as the costs of caring—that precipitate depersonalisation and compromised patient care. Despite its far-reaching implications, current understanding of the costs of caring amongst HCPs in home-based settings remains remiss. Thus, we conduct a scoping review to investigate the experiences of HPCs providing home-based palliative care to terminally ill adult oncology patients.
Methods
Outlined by the Systematic Evidence-Based Approach and PRISMA guidelines, searches for relevant articles published between 1st January 2000 and 1st October 2024 were performed on PubMed, Embase, Scopus, PsycINFO and CINAHL databases. Selected articles underwent concurrent and independent thematic and content analyses. Central themes and categories were extracted and merged, forming key domains that framed the discussion.
Results
Of 5676 titles and abstracts screened, 543 full-text articles were reviewed. 20 full-text articles were analysed for inclusion. Four key domains emerged: (1) motivations to practice palliative care; (2) impact on personhood of HCPs (3) challenges faced by HCPs; and (4) support systems for HCPs.
Conclusion
Providing home-based palliative care to adult oncology patients is fulfilling for HCPs—fostering meaningful professional relationships with patients, a more holistic perspective of life and death and a heightened sense of personal accomplishment. However, HCPs may encounter dissonance amidst conflicts between their dominant beliefs and new experiences, leading to burnout, depersonalisation and poor care delivery that are further exacerbated by the costs of caring, if inadequately addressed. Longitudinal and accessible personalised and organisational support is key to sustaining HCPs’ capacity to deliver compassionate and high-quality palliative care. The use of the Ring Theory of Personhood framework in this review provides an avenue for the structuring of such support systems.
Background
An increasing number of Singaporeans are choosing to live their final days at home [1,2,3,4,5,6,7]. This is reflected in the expansion of Singapore’s palliative homecare system that aims to increase its capacity by 50% to meet the needs of a ‘superaged’ population [8]. This preference for palliative homecare in Singapore is also deeply entwined with the desire to maintain dignity and comfort in a familiar environment [1,2,3,4,5,6,7], buttressed by dominant Asian values on family cohesion and filial piety as patients spend their final days surrounded by loved ones [9]. However, providing care for dying patients in their homes brings psychosocial, practical and emotional stressors to familial and non-familial caregivers [10,11,12,13,14,15] that are often compounded by inadequate support [16,17,18,19,20].
Recent studies have revealed that there is a cost of caring experienced by healthcare professionals (HCPs), defined as trained providers of health services such as physicians, nurses and allied health professionals, as they care for end-of-life patients. This cost of caring extends beyond traditional notions of compassion fatigue and is defined by a complex and dynamic web of moral distress, compassion fatigue, vicarious trauma and secondary traumatic stress [21,22,23,24,25,26,27,28,29,30,31,32] as personal and professional boundaries blur [33]. If HCPs are left unsupported [16,17,18,19,20], the costs of caring may culminate in burnout [21, 34,35,36,37,38,39,40,41,42,43,44,45,46], leading to depersonalisation, derealisation and compromised patient care [23,24,25,26,27]. It is proposed that HCPs in homecare services face an increased risk of the costs of caring. For one, HCPs practicing in palliative homecare lack consistent access to the resources in a tertiary setting, including larger palliative care departments, support from other specialties and professions and specialty palliative care training [8, 47]. Furthermore, compared to familial caregivers, HCPs may have less awareness of patients’ preferences and values—limiting their ability to provide effective holistic care to alleviate suffering [47] which, in itself, is a source of moral distress.
Given that the costs of caring amongst HCPs practicing home palliative care [48,49,50] remain poorly delineated and have yet to be studied from a whole-person holistic lens of personhood [51], this study aims to illuminate the experiences of HCPs providing home-based care for terminally ill adult oncology patients. The decision was made to focus on adult oncology patients as they constitute a significant proportion of individuals receiving palliative care [8, 52,53,54,55,56]. While patients with life-limiting non-cancer illnesses, such as progressive neurological conditions, also benefit from palliative care [8], their clinical, spiritual, social and ethical needs are diverse and unique. Addressing these distinct aspects warrants separate studies to ensure comprehensive understanding and tailored care approaches.
Thus, the research question for this scoping review is, ‘What are the experiences of healthcare professionals caring for adult oncology patients receiving palliative care at home?’ to lay the foundation for extending better support to HCPs.
Methods
We utilise the Systematic Evidence-Based Approach (SEBA) methodology and the Ring Theory of Personhood (RToP) theoretical framework to guide our review.
The systematic evidence-based approach
The six-staged SEBA methodology instils consistency, reproducibility and trustworthiness as a methodological framework to search, collect and analyse current literature for scoping reviews (Fig. 1). The SEBA methodology adopts a constructivist approach [57,58,59,60,61,62,63] and relativist lens [64,65,66,67,68,69] to develop a holistic and nuanced understanding of the costs of caring as a sociocultural construct [41,42,43,44].
The ring theory of personhood
The RToP is a clinically evidenced theoretical framework that captures a HCP’s self-concept of personhood (‘what makes you, you’), sketching their evolving belief systems by recording changes in one or more domains of personhood (Fig. 2). The RToP has been used to map the impacts of resonance (which occurs when a HCP’s experiences, reflections and meaning-making align with their dominant beliefs) and dissonance (which occurs when such experiences conflict, rather than align, with existing beliefs) on different elements of personhood and resultingly, their belief systems and identity. The RToP also accounts for the effects of growing competencies, deeper insights and guided reflections [70,71,72] drawn from clinical experiences [24, 73] that impact personhood, identity and belief systems.
The RToP posits that belief systems comprise four intertwined Innate, Individual, Relational and Societal Rings. The Innate Ring contains belief systems informed by the HCP’s demographic features and spiritual and religious beliefs. The belief systems in the Individual Ring draw on the HCP’s conscious function, including their behaviour, emotions and personality. Close familial relationships and friendships drive belief systems housed in the Relational Ring whilst sociocultural, professional, legal and ethical norms, rights, expectations, roles and responsibilities draw on the belief systems in the Societal Ring.
Stage 1 of SEBA: the systematic approach
Overseeing the research process was an expert team of medical librarians from the Yong Loo Lin School of Medicine (YLLSOM), along with local educational experts and clinicians at the National Cancer Centre Singapore, the Palliative Care Institute Liverpool and YLLSOM. Their involvement served to bolster the reliability and transparency of the methodology, ensuring compliance with the PRISMA-ScR guidelines (see Additional File 1).
Determining the research question and inclusion criteria
Steered by Population, Comparison and Context (PCC) framework of inclusion and exclusion (Table 1), the primary research question was determined as follows: ‘What are the experiences of healthcare professionals caring for adult oncology patients receiving palliative care at home?’. This was complemented by the following secondary research questions: ‘What factors impact a healthcare professional’s experiences caring for adult oncology patients receiving palliative care at home?’ and ‘How are healthcare professionals impacted by caring for adult oncology patients receiving palliative care at home?’.
Searching
Searches for articles published between 1st January 2000 and 1st October 2024 on PubMed, Embase, Scopus, PsycINFO and CINAHL databases commenced between 1st October 2024 and 2nd October 2024. ‘Snowballing’ through review of the references of included articles identified additional articles. Additional File 2 details the full search strategy for the database searches.
Extracting and charting
The titles and abstracts were independently reviewed by members of the research team, who then discussed and deconflicted their findings through Sandelowski and Barroso’s [74] process of “negotiated consensual validation” wherein “research team members articulate, defend, and persuade others of the ‘cogency’ or ‘incisiveness’ of their points of view”. Subsequently, the full text of each shortlisted abstract was reviewed. Finalised articles were summarised to retain key information and underwent quality appraisal (see Additional File 3).
Stage 2 of SEBA: split approach
The data from the searches were concurrently analysed by two research teams (LT, SS, YYG, RF, RG, YTO, LKRK). One team utilised Braun and Clarke’s [75] approach to thematic analysis, synthesising codes from the ‘surface’ meaning of the included articles to arrive at semantic themes. The other team employed Hsieh and Shannon’s [76] directed content analysis, utilising predetermined codes drawn from Kaup et al.’s [77] qualitative study titled, ‘Care for Dying Patients at Midlife’, which surveyed nurses’ experiences of caring for midlife patients in specialised palliative homecare. Consensus on the key themes and categories of each article was attained through “negotiated consensual validation” [74].
Stage 3 of SEBA: the jigsaw perspective and stage 4 of SEBA: the funnelling process
As complementary qualitative data gives “a richer, more nuanced understanding of a given phenomenon” [78], overlaps in themes and categories were combined and then compared with the summaries of the included articles to ensure that the ‘jigsaw pieces’ appropriately represented the data across the included articles.
Stage 5 of SEBA: analysis of evidence-based and non-data driven literature
The inclusion of non-peer-reviewed or non-evidence-based literature raised concerns about potential bias in data analysis. However, by comparing themes/categories from such literature with that of peer-reviewed data, it was ascertained that the research data remained unbiased despite the inclusion of non-peer-reviewed or non-evidence-based literature.
Results
In total, 5676 titles and abstracts were identified after removal of duplicates. 543 full-text articles were then reviewed and 20 full-text articles were analysed (Fig. 3).
Among the 20 articles analysed, nurses were the most frequently studied healthcare professionals (n = 17), followed by general practitioners (GPs) (n = 9). Community health workers (CHWs), physiotherapists, psychologists and occupational therapists were each represented in a single study (n = 1).
Four key domains were identified: (1) motivations to practice palliative care; (2) impact on personhood of HCPs; (3) challenges faced by HCPs; and (4) support systems for HCPs.
Domain 1: motivations to practice palliative care
Providing home-based palliative care for adult oncology patients is meaningful and rewarding for HCPs across different professions (e.g. physicians, nurses, CHWs) [30, 79,80,81,82]. Griffiths et al.’s [79] interviews with homecare nurses in the United Kingdom found that they attached importance to their role, believing they had “a lot to offer”, were practicing “real nursing” and “making a difference to somebody’s life”. This notion was also echoed in Potts et al.’s [30] interview study with informal and, at times, unlicensed rural medical practitioners who served as CHWs. The study revealed that CHWs were highly valued by patients and their families as companions providing clinical, psycho-emotional and spiritual support despite their varied training in healthcare. CHWs found that this recognition by the patients and their families, as well as the ability to alleviate suffering holistically, made their work rewarding [30].
Domain 2: impact on personhood of HCPs
Many HCPs, especially those who report feeling supported at work, find their work gratifying and are invigorated by maintaining an open and emotional climate with patients and families [77] and enhancing healthcare-community ties [83]. HCPs in the homecare setting also report being privileged by the opportunity to build deeper relationships with patients and their families over time [30, 79, 83, 84]. This allows them to better understand and cater to the unique needs of patients [30, 83].
However, when unsupported at an institutional level, HCPs may become conflicted by the inability to proceed with what they believe are morally and ethically correct decisions due to external factors, such as inadequate compensation, resource limitations and difficult care situations [7, 81, 82, 85, 86].
To best understand and appreciate the effects on a HCP’s personhood, the lens of the RToP can further structure our findings.
The innate ring
As the Innate Ring contains belief systems informed by the HCP’s demographic features and spiritual and religious beliefs, exposure to practice across cultures and ethnic groups over a variety of settings can nurture cultural sensitivity and boost a more holistic perspective of patients [85] and their families, as well as their spiritual needs [80, 81, 85, 87] and concepts of dignity [82, 87]. Perceptions of death are also re-evaluated as a divine order facilitating the circle of life [7]. For example, nurses in Iran and Sweden reported that caring for dying patients led them to re-examine their lives and views on death whilst engaging in existential contemplation [7, 77].
The individual ring
Growing competence, experience and a developing sense of self help HCPs to boost adaptability [79, 80] and cope in the face of moral distress and growing costs of caring [82, 88]. Growth in the ability to cope with stressors is further reinforced when there are guided reflections [77, 81]. In Ercolani et al.’s [88] study of psychologists, physicians and nurses providing home palliative care, it was found that psychologists had improved coping by virtue of their formal training in recognising and regulating their emotional responses. In contrast, without effective support, the challenging aspects of HCPs’ experiences compound the effects of the costs of caring [86, 87].
The societal ring
Greater appreciation of a patient’s and their family’s sociocultural considerations fosters trust between HCPs and the patient and their family. This improves role clarity [79, 86] and collaboration that enhance patient outcomes [82, 89]. However, numerous factors exacerbate the effects of the costs of caring, including the exposure to health and economic disparities [85, 90]; professional, legal, sociocultural and systemic expectations and considerations [87, 88]; and poor interprofessional working practices and support [77, 89].
Domain 3: challenges faced by HCPs
The challenges faced by HCPs can be broadly divided into subcategories, including personal, professional and systemic challenges.
Personal considerations
When the HCPs’ experiences, reflections and attempts at meaning-making align with their dominant beliefs, a feeling of resonance results; conversely, dissonance arises when there is conflict. Both states bear significant ramifications. Dissonance evokes a sense of helplessness, meaninglessness and fear of mortality that bleed into a HCP’s personal perspectives and relationships [88] and leave deeper issues unresolved [82]. Dissonance is further exacerbated when there is little support for patients and their families, a lack of guidance of HCP’s reflections and meaning-making [77] and/or conflicts between personal and professional beliefs [85, 88]. The challenges from dissonance can progress into feelings of burnout and exhaustion. Without proper channels to process unpleasant experiences, feelings of frustration can compound. Conversely, resonance is boosted when a holistic appreciation of patient needs and balanced roles and responsibilities foster greater insights, improved confidence [80], enhanced interprofessional team-working [82] and improved care delivery [79,80,81, 87]. These experiences were found to be shared across various healthcare professions providing home palliative care.
Professional considerations
HCPs across various professions face common professional challenges that test their expertise, resilience and adaptability [85, 88]. Balancing healthcare duties with complex and multifaceted patient needs [7, 81], coupled with inadequate support and training, limited resources and technical skills [30, 79, 81] and unrealistic patient and familial expectations [30], complicates coping [77, 84] and precipitates the costs of caring. In Johansen et al.’s [91] interprofessional study, it was found that both nurses and GPs shared similar concerns about facing out-of-office crises and a lack of communication between hospitals and primary care staff impeding smooth transitions of care.
Specific professions also face unique challenges. Nurses report feelings of isolation and a lack of support and guidance from physicians [82], often bearing full responsibility for managing not only medical needs, but also psychosocial and economic issues of their patients [7, 81]. CHWs who lack formal medical and nursing training also report specific limitations as they are often ill-equipped to handle emergencies, emotional distress and end-of-life needs [30]. This is in part due to the curative, rather than a palliative, intent in the type of care provided by CHWs [30].
Overall, HCPs grapple with inadequate training, limited resources, novice technical skills [30, 79, 81] and unrealistic expectations from patients and families—further compounding such difficulties [77, 84] and straining relationships between HCPs and families [30]. Volatile household environments, marked by conflict, substance dependency and antisocial behaviours, present additional sources of stress and obstacles to delivering effective care [84]. In contrast, an alignment of professional expectations and an acceptance of practice and professional limitations foster trust and strengthen care delivery [81, 87], enhance holistic care [79, 80] and reinforce professional confidence, competence [80] and multi-professional practice [82].
Systemic considerations
Poor care coordination between healthcare institutions and home settings presents a significant challenge in the homecare setting, resulting in fragmented care and limitations to care transitions [29, 85]. For instance, Johansen and Ervik’s [91] study revealed the challenges faced by GPs in fulfilling their roles as coordinators of care for palliative care patients previously managed by hospital specialists, particularly when inadequate information was documented. This was also recognised by nurses in the same study, who were concerned about compromises in the quality of medical care provided by GPs due to a lack of handover [91].
Domain 4: support systems for HCPs
Personal and institutional support systems are essential for HCPs to navigate the personal, professional and institutional challenges of home-based palliative care. These support systems are found to be consistent across members of various health professions.
Personal coping strategies
Adaptive coping strategies, such as maintaining a positive attitude and problem-solving, reduce emotional exhaustion and distress [88] and the risks of the costs of caring [7, 81, 84], particularly when complemented with peer support [82] and effective work-life balance [77, 88].
Institutional support
A supportive team structure, monthly supervision sessions with an external expert and weekly multidisciplinary case discussions [92] promote effective care [77, 86], early identification of distress [86], self-awareness, self-care and professional satisfaction [30, 80]. Similarly, technology-enhanced communication with families, such as telemedicine and digital care plans, facilitates information exchange and timely support [87]. Additional training resources and educational opportunities are key to professional development [80], enhancing self-awareness, self-care and professional satisfaction [30, 80].
Discussion
Our results reveal that providing home-based palliative care to adult oncology patients is fulfilling for HCPs, aligning with their vision of making “a difference to somebody’s life” [30, 79]. Many HCPs report a greater appreciation for life [7, 77], more holistic perspective of life and death and a heightened sense of personal accomplishment [83]. These experiences contribute to improved interprofessional working, deeper meaningful professional relationships with patients and their families and better understanding of the sociocultural considerations and needs of patients [30, 83]. In addition, HCPs report stronger ability in catering to the unique needs of patients [30, 83], navigating intense interpersonal dynamics, addressing crises, confronting end-of-life issues under challenging circumstances [21, 22, 28, 93, 94] and, in some cases, reducing hospital admissions [87]. Addressing our primary research question, ‘What are the experiences of healthcare professionals caring for adult oncology patients receiving palliative care at home?’, HCPs also reveal greater confidence [80] and cultural sensitivity [79,80,81,82, 85, 87].
In addressing our secondary research question ‘How are healthcare professionals impacted by caring for adult oncology patients receiving palliative care at home?’, HCPs also recognise the need for longitudinal support to contend with the costs of caring [77, 81, 82, 86,87,88]. These challenges are precipitated by health and economic disparities [85, 90]; professional, legal, sociocultural and systemic expectations [87, 88]; and poor working conditions and support [77, 89].
Therefore, beyond evidencing the costs of caring, this review underscores the need for greater purposeful, individualised, timely and longitudinal support for HCPs working in often difficult and solitary practices. This is critical to the shepherding of the HCP’s professional identity formation and thus their professional interactions and overall patient care. It is also prudent for tertiary institutions and specialist palliative care centers to frequently seek feedback from HCPs to gain insights and provide them with updated knowledge to improve expertise, such as the processes of hospice referral, end-of-life legislation and law (e.g. regarding advance directives) and symptom management [95, 96]. Further education and training can be provided at the undergraduate and post-graduate level through a continuing spiral curriculum with opportunities for experiential learning and longitudinal mentorship [22, 24, 93, 96,97,98,99,100,101], given that many HCPs still possess minimal palliative care training [95, 102, 103]. We draw on earlier work to suggest the that use of e-portfolios, in conjunction with a mentored training programme that supports immersive learning, is pivotal—particularly in the presence of changeable work settings where a structured practice environment may be challenging to create. Peer support and accessible and timely personalised support become all the more important, as are evaluations in changes to the HCP’s RToP. It is also our recommendation that future research focus on developing evidence-based support programmes, utilising frameworks such as the RToP, to ensure sustainable and fulfilling careers in this complex and evolving aspect of palliative care.
Limitations
Majority of the literature focused on homecare nurses and, to a lesser extent, GPs. This may be due to the predominance of these professions in providing home palliative care compared to others, such as allied health professions. This limited scope may not fully capture the diverse experiences and contributions of the broader multidisciplinary team as palliative care continues to expand to include allied health professionals with formal palliative care training and roles [104, 105]. Whilst it was found that majority of the results were in concordance across various healthcare professions, we acknowledge that each healthcare profession has their unique role, practice and experiences. Thus, there may be reduced generalisability of the findings to other populations. Further, the inclusion of only English articles may have led to the omission of relevant non-English articles. Some findings, such as the ‘Doing Good Care’ theory, while constructed using proper methodology (such as interviews and thematic analyses) and enriching on their own, have not been further utilised and tested by subsequent studies. Thus, due to limited data, confirming the generalisability of this theory is challenging. However, by including such theories in our review, we aim to encourage further testing and validation. Lastly, despite efforts to reduce biases through the negotiated consensual approach and engagement of the expert team, individual bias may persist.
Conclusion
This SEBA-guided scoping review has uncovered that HCPs working in palliative home settings garner positive motivations and experiences from their role, especially pertaining to healthy reflections on mortality and the belief in making a difference in others’ lives. However, they are also faced with emotional challenges at a personal and institutional level, where the effects of the costs of caring on personal and professional fronts are salient. Longitudinal and accessible personalised and organisational support, structured by frameworks such as the RToP, is thus necessary to sustain HCPs’ capacity to deliver compassionate and high-quality palliative care.
Data availability
All data generated or analysed during this study are included in this published article and its supplementary information files.
Abbreviations
- CHW:
-
Community Health Workers
- GP:
-
General Practitioner
- HCP:
-
Healthcare Professionals
- PCC:
-
Population, Concept, Context
- RToP:
-
Ring Theory of Personhood
- SEBA:
-
Systematic Evidence-Based Approach
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Acknowledgements
The authors would like to dedicate this paper to the late Dr. S Radha Krishna, whose advice and ideas were integral to the success of this study; the late A/Prof Cynthia Goh, whose mentoring and insights guided the analysis of this data; and Thondi, Maia Akhlil and Raja Kamarul Ariffin whose short lives continue to inspire us to better support and care for others. We would also like to thank Annelissa Chin Mien Chew for her contributions to this study.
Funding
This work was supported by the MPS Foundation Grant Programme Grant number TMPSFG2023008. The MPS Foundation was established to undertake research, analysis, education, and training to enable healthcare professionals to provide better care for their patients and improve their well-being. To achieve it supports and funds research worldwide that will make a difference and can be applied in the workplace.
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All authors LT, SS, YYG, RF, RG, YTO, NABAH, TLXL and LKRK were involved in data curation, formal analysis, investigation and preparation of the original draft of the manuscript, as well as the review and editing of the manuscript. All authors have read and approved the manuscript.
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Tan, L., Sheri, S., Goh, Y.Y. et al. Experiences of healthcare professionals providing palliative care in home settings - a scoping review. BMC Palliat Care 24, 83 (2025). https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s12904-025-01728-z
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DOI: https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s12904-025-01728-z