Abstract
Keywords
Introduction
The demand for palliative care (PC) is increasing worldwide due to the ageing population, and rise in the incidence of cancer and other chronic life-limiting illnesses (CLLI). 1 In India, 63% of deaths are attributed to non-communicable diseases, with majority requiring PC. 2 Despite this, access to PC in India remains limited, primarily due to the scarcity of trained manpower, training in PC and drug availability.3,4
Considering scarcity of dedicated PC centres and high prevalence of CLLI, PC knowledge and skills are vital for nurses working in diverse health care settings and not just those working in dedicated PC centres.5,6 Empirical evidence suggests that practicing nurses in India lack sufficient knowledge of PC.3,4 Since nurses often encounter and care for patients with advanced and incurable illnesses, it is crucial for them to have PC knowledge and skills. 3 Education plays an important role in improving knowledge and attitudes of health care professionals in PC. 3 The End-of-life Care Nursing Education Consortium (ELNEC) is a standardized education program aimed at enhancing nurses’ knowledge and skills in dealing with end-of-life (EOL) concerns. 4 ELNEC has been effective in improving the knowledge and attitudes of Indian nurses regarding PC and care for the dying. 4 However, the long-term impact of ELNEC on knowledge and attitudes and its translation into clinical practice remains unknown. Evaluating the clinical impact of such educational interventions requires long-term follow-up, which has not been conducted so far. Therefore, this follow-up survey was conducted address this gap by assessing the long-term impact of the ELNEC on nurses’ knowledge, attitudes, and practice; 18 months after completing the program. The objectives of the study were: (1) to evaluate the long-term retention (18 months) of PC knowledge and attitudes towards caring of the dying among nurses after the ELNEC program and (2) to assess the translation of acquired knowledge and attitudes into clinical practice (KAP-GAP analysis) of Indian nurses working in non-PC settings.
Methods
This follow-up survey was conducted at a teaching tertiary care institute in North India, following approval from the institutional ethical committee (IEC number-IEC/AIIMS/BTI/348). The study included registered practising nurses who had participated in the ELNEC course in September 2021 and consented to participate in the study. 4 At the end of the questionnaire, an option to consent was provided “By submitting this form, I hereby give my consent for the responses to be used for research purposes”. A prior quasi-experimental study by the authors evaluated impact of ELNEC (conducted in September, 2021) on Indian nurses’ knowledge and attitude towards PC and EOLC. 4 In that study, nurses knowledge and attitude were assessed using PCQN and FATCOD-B at 2 timepoints: at baseline and at the conclusion of the 3-day ELNEC course; henceforth termed as pre-ELNEC and post-ELNEC. The results of the study (pre-ELNEC and post-ELNEC scores) have been reported elsewhere. 4
In the present follow-up study, a questionnaire based survey was mailed to all the participants of the previous study. The email contained a link to the questionnaire in the form of a Google form. Data collection took place from April 2023 to June 2023. Reminders to complete the survey were sent at 2-week intervals over this period. The questionnaire (Appendix 1) consisted of 4 sub-sections: (1) demographic and baseline data; (2) PC knowledge as measured by the PCQN; (3) attitudes towards caring of the dying as measured by the FATCOD-B; and (4) a Clinical Practice Questionnaire developed and validated to assess impact of ELNEC on the participants’ nursing practice. The PCQN assesses PC knowledge with 20 true/false/don’t know items, covering philosophy and principles (4 items, item no. 1, 9, 12, 17), pain and symptom management (13 items, item no. 2-4, 6-8, 10, 13-16, 18, 20), and psychosocial aspects of care (3 items, item no. 5, 11, 19). The total score ranges from 0 to 20, with higher scores indicating better knowledge. 7 The FATCOD-B evaluates attitudes towards caring of the dying using a Likert-type scale, with a total score range of 30 to 150 converted to a percentage score ranging from 0%–100%. Scores of >65% indicate positive attitudes towards EOL care and <50% as negative attitudes. 8 The 18-month follow-up scores obtained in this study have been referred to as follow-up scores.
The clinical practice questionnaire was developed based on the review of existing literature and analysis of thematic areas covered in the ELNEC.7,8 The questionnaire demonstrated good internal consistency with a Cronbach’s alpha coefficient of .8. The questionnaire was pilot tested by ten nurses from diverse specialities and representative of the target population. The feedback and suggestions were incorporated. Responses from the pilot testing were not included in the final analysis. The clinical practice questionnaire assessed various dimensions, such as motivation to work in PC, perceived improvements in nursing practice and communication skills, the necessity for ongoing PC training, and the application of ELNEC training in different areas of nursing practice. Apart from the close-ended questions, the questionnaire comprised of open-ended questions (such as- “Give 1 example where and how ELNEC training helped in your clinical practice” and “Do you have any suggestions on how to improve PC training) allowing participants the freedom to express their views and experiences; falling outside the ambit of the deductive close-ended questionnaire items. The open-ended questions allowed nurses to share their real-life experiences and practical applications of the knowledge and skills acquired through the ELNEC training.
The questionnaire was designed using Google forms through a google mail designed exclusively for the study. Only the research team had access to the mail and participant responses. At the beginning of the questionnaire, a participant information sheet explained the rationale of the study, that participation is voluntary, that their anonymized responses will be used for research purposes and that they can withdraw at any time prior to the data analysis. Responses from only those participants who consented to participate in the study (Appendix I) were included in the analysis.
Statistical Analysis
The participant responses were exported to a password protected google sheet and anonymized for analysis. All the statistical calculations were done using Statistical Package for Social Science (SPSS Inc., Chicago, IL, software version 21 for Windows). The categorical and quantitative data were reported using frequency (%) and mean (standard deviation). The 18-month follow-up PCQN and FATCOD-B scores as obtained in the present study were compared with the Pre-ELNEC and post ELNEC scores (obtained and reported in an earlier study) 4 using independent t test and Mann Whitney U test for continuous normally and non-normally distributed data respectively. The responses from the Likert scale were dichotomized by placing “strongly agree” and “agree” responses in 1 category and “neither agree nor disagree,” “disagree,” and “strongly disagree” responses in another. Dichotomization is a commonly employed strategy to condense multi-category responses into broader positive and negative trends, facilitating grouping of responses and interpretation of the results. 9 Chi-square or Fisher’s exact test was used for categorical variables. Results were considered statistically significant at a P-value <.05. Qualitative data from the free text responses were analysed using thematic analysis. 10 The free text responses were coded which were then organized into broader themes in an inductive manner. The coding was carried out by 2 independent researchers and themes developed in consultation with all the researchers. This eliminated individual researcher bias due to preconceived notions and perceptions and ensured that the findings were grounded in the data. The themes were supported by illustrative quotes from the participants. Findings from the qualitative data were used to expand upon the findings from the quantitative data.
Results
Nurses Demographic and Baseline Data, Response Rate: (69/108 = 63.8%).
Abbreviation: ELNEC- End-of-Life Care Nursing Education Consortium.
Impact of ELNEC on PC Knowledge (PCQN)
PCQN Responses Pre- ELNEC (Total responses = 108), Post-ELNEC (Total responses = 108) and Follow up (Total Responses = 69).
aStatistically significant decrease,
bStatistically significant increase.
Abbreviation: PCQN- Palliative care quiz for nurses, ELNEC- End-of-Life Care Nursing Education Consortium.
PCQN Subdomains.
aStatistically significant increase.
bStatistically significant decrease.
Abbreviation: PCQN- Palliative care quiz for nurses. Score values are Mean ± SD
Impact of ELNEC on Attitude Towards Care of the Dying (FATCOD-B)
FATCOD-B Response Pre-ELNEC, Post-ELNEC and Follow-Up.
aStatistically significant increase.
bStatistically significant decrease.
Abbreviation: FATCOD-B- Frommelt Attitude Toward Care of the Dying Scale Form B, ELNEC- End-of-Life Care Nursing Education Consortium.
Values are Mean ± SD
Impact of ELNEC on Clinical Practice
Quantitative Findings
Majority of participants agreed that ELNEC training motivated them to work in PC or care for patients with chronic life-limiting illnesses (n = 52, 75.3%), improved their nursing practice (n = 60, 86.9%), and helped enhance their communication skills (n = 51, 73.9%). (Table 5) Additionally, a considerable percentage of nurses believed that regular PC training would be beneficial in improving their nursing practice (n = 55, 79.7%). When asked about their current communication practices, most nurses reported frequent interactions with patients with CLLI (n = 45, 65.2%), with a smaller portion indicating that they always (n = 6, 8.2%) or often (n = 10, 14.5%) communicate with such patients. In terms of ease, post-ELNEC training, 68.1% (n = 47) of nurses found communicating with patients or their relatives to be better than before, while 14.5% (n = 10) reported feeling very easy in such conversations.
In terms of their preferences for future training, 60.9% (n = 42) of participants suggested that PC training should be repeated yearly, while 36.2% (n = 25) preferred it to be conducted every 6 months. Moreover, most nurses (n = 54, 78.3%) would definitely recommend ELNEC training to their colleagues. The clinical practice questionnaire also explored specific aspects of nursing practice where ELNEC training made an impact. Nurses reported employing pain management techniques (n = 19, 27.5%), communication skills (n = 13, 18.8%), and caring for patients in their final hours of life (n = 11, 15.9%) in their nursing practice post-ELNEC training. Similarly, they found communication skills (n = 18, 26.1%), pain management techniques (n = 16, 23.2%), and ethical considerations (n = 7, 10.1%) to be the most useful teachings of ELNEC in their nursing practice.
Qualitative Findings
Clinical Practice Questionnaire Evaluation After Completion of 18 months of ELNEC Program.
astatistically significant.
Clinical Practice Questionnaire Evaluation After Completion of 18 months of ELNEC Programme.
Clinical Practice Questionnaire Evaluation After Completion of 18 months of ELNEC Programme.
Abbreviation: ELNEC- End-of-Life Care Nursing Education Consortium.
Improved Competencies in Communication Study findings revealed a notable improvement in nurses’ communication skills post ELNEC training, as highlighted by 18 participants. One nurse, for instance, shared her experience: “Before ELNEC Training, I used to have hesitations when talking to patients and explaining their diseases. A pivotal moment came when I was caring for a patient in chemotherapy day care ward, diagnosed with Breast Cancer. She was initially unaware of her condition, only told about a lump. I strongly believed in patients' right to know, and I initiated a conversation with her family. With their consent, we collectively disclosed her diagnosis. Remarkably, she received the news positively, without tears or distress, underscoring the value of compassionate communication in nursing.” Improved communication skills were cited by nurses working across clinical settings, including critical care units, emergency triage, and surgical wards. Improvement in communication skills were realized while communicating with patients with CLLI, worsening of disease, and help patients and their caregivers verbalize their emotions. Nurses also reported increased competence in breaking bad news to patients and their families.
Increased Self-Efficacy in PC Nurses reported a noticeable boost in their self-efficacy in PC after ELNEC training. One of the nurse participants shared her experience: “An incident that highlighted my newfound confidence involved a patient on palliative treatment who was experiencing confusion about pain during the dying process. Following ELNEC training, I felt equipped to engage the patient and address their doubts effectively, facilitating a more informed and comfortable end-of-life experience.” Another nurse iterated: “Daily, we have to deal with patients and their relatives, approaching each situation with kindness. ELNEC training has given me the tools to handle these interactions more effectively, providing comfort not only to the patients but also to their families. Knowing that I can make a difference in their journey gives me a sense of fulfilment, and this will undoubtedly contribute to a more peaceful sleep at the end of each day.” Some responses indicated personal growth, with nurses feeling more emotionally resilient and capable of providing support during critical moments. ELNEC training was acknowledged for its role in making nurses feel stronger, more composed, comfortable and confident while caring for dying patients and addressing their diverse PC needs. Nurses utilized the new learned skills while caring for patients with chronic heart failure, chronic liver disease and non-palliative care patients for eg, pain assessment and management in post-operative patients.
The need for continued PC education and Training This theme highlights the importance of sustained education initiatives to continually enhance their competencies and deliver optimal care. Nurses emphasized the need for regular sessions, practical demonstrations, and simulations. One nurse articulated this as: “While ELNEC training was transformative, it emphasized the necessity for continuous learning. Regular sessions, practical demonstrations, and simulations are critical to honing our PC skills and ensuring we provide the highest quality care to patients with complex needs.” Nurses recommended training programs that are flexible and accessible to accommodate their busy schedules and expressed a preference for shorter, more frequent sessions. Some responses indicated a desire for advanced training to empower nurses to take on leadership roles in PC. Beyond foundational education, nurses seek opportunities for mentorship, advanced certifications, and leadership development in PC.
Discussion
The findings of this study revealed long-term retention of knowledge as well as their translation into clinical practice, among Indian nurses after the completion of ELNEC program. To the best of authors knowledge, this is the first study evaluating long-term impact of ELNEC program. Our study’s outcomes resonate with earlier research, affirming the short term and long term efficacy of PC education.4,11-17 Grant et al 12 provided critical insights into the effectiveness of ELNEC, illustrating its positive influence on teaching effectiveness and the perception of PC education in the work setting. 12 A study conducted by Prem et al. highlighted the knowledge gap among nurses in PC, suggesting that education is vital to enhance clinical practice. 3
As we explored the long-term impact of ELNEC training, nurses exhibited improvement in some domains of PC knowledge (especially in pain and symptom management) after ELNEC training and this improvement was sustained at the follow-up. Similar results were found in a quasi-experimental study, demonstrating a significant enhancement in nurses’ knowledge of pain management in cancer patients following specialized training. 13 Saadati et al also observed substantial improvements in nurses’ awareness of pain physiology and assessment methods, emphasizing the value of structured education in this domain. 14
One of the key findings in our study revolves around the impact of ELNEC on nurses’ attitudes. It is noteworthy that, although there was a statistically significant decline in scores at the follow-up assessment (P = .0001), the improvement in attitude was sustained in response to statements, such as “Giving care to dying patients is a worthwhile experience for me” and “I would not want to care for a dying patient.” These shifts signify a significant alteration in the way nurses view their roles and responsibilities in PC. When compared with responses prior to ELNEC training (pre- ELNEC), this reflects a transformation from potential reluctance to a more positive and compassionate orientation. This shift in attitude suggests that with the right training and support, nurses can evolve into even more compassionate and effective caregivers.
Nurses reported feeling motivated to work with patients facing CLLI, demonstrating the program’s potential to attract more health care professionals to PC. Additionally, the training was found to improve nursing practice and communication skills, which are essential qualities for providing comprehensive and empathetic care to patients with complex medical conditions. These findings align with those of El-Nagar et al, who concluded that PC education significantly boosted nurses’ confidence in caring for PC children. 16 Research consistently demonstrates that enhanced patient-physician communication is associated with increased satisfaction in PC. 11
The findings from qualitative data mirrored those from quantitative data. Pain management, communication skills, and EOL care were identified as significant areas where ELNEC training made a difference. These findings highlight the versatility of ELNEC in preparing nurses to address the needs of patients with chronic illnesses, regardless of the clinical setting. Furthermore, the survey indicated that nurses see value in continued PC training, with many expressing a preference for yearly or six-monthly repetitions of the program. Many nurses expressed the need for shorter and more frequent training sessions to accommodate their busy schedules and reinforce knowledge and skills regularly. Incorporating real-life examples and practical knowledge into training curricula was another key recommendation to enhance the applicability of PC training to their clinical practice. This emphasizes the ongoing commitment of nurses to improve their skills and knowledge in providing PC.
One of the notable findings in our study is the decline in PC knowledge retention and attitudes over time, which is consistent with the findings of other authors .10,16 The findings of Ayed et al investigated nurses’ knowledge and attitudes towards PC. Their results indicated that a significant proportion of nurses surveyed had poor knowledge (20.8%) and attitudes (6.2%) towards PC, despite a substantial number having received previous PC training. This aligns with the present study’s emphasis on the need for ongoing support and reinforcement to sustain gains in PC knowledge and attitudes. 4 Moreover, integration of communication-focused training and interactive learning methods, such as skill stations and simulations, can further enhance nurses’ competencies and confidence in delivering PC. 11 Furthermore, Gu et al evaluation of Chinese oncologists uncovered deficiencies in knowledge, highlighting the necessity for further education in PC. 15 Fostering a supportive work environment that encourages ongoing learning and development in PC is crucial. Online training platforms can provide flexibility and accessibility for health care professionals to engage in continuous education at their convenience. 18
Shorter and more frequent training sessions with practical components and case-based learning can enhance the applicability of PC training to clinical practice, in line with the suggestions by Callahan et al. 17 The study by Gu et al also underscores the significance of further education in addressing knowledge deficiencies in PC. 15
Limitations
The study’s limitations include a single site study, no comparision group, relatively small sample size, recall bias and low response rate. While a response rate of >70% is recommended to ensure external validity, a lower response rate of >60% has been considered as acceptable by some. 19 We also acknowledge the potential for response bias in the qualitative section of the clinical practice questionnaire. The phrasing of the questions may have influenced participants to primarily share positive experiences related to ELNEC training, possibly influencing the overall perspective shared by the respondents. The decision to conduct the study after 18 months was influenced by previous research on PC knowledge retention, which demonstrated variations in the duration of follow-up assessments ranging from 12 to 24 months.11,20
Despite these limitations, the study’s findings emphasize the need for continuous support, reinforcement, and integration of PC principles into everyday practice to sustain the gains achieved through the ELNEC program. In future studies, we recommend conducting qualitative research to delve deeper into nurses’ perspectives and experiences with the ELNEC program. This approach will offer a more detailed understanding of how the training influences individual views and uncover specific challenges in implementing PC principles across different clinical settings. This insight can help refine training strategies and provide targeted support for nurses.
Conclusion
In conclusion, the ELNEC program has demonstrated lasting positive impact on nurses’ knowledge, attitudes, clinical practices in PC and communication skills, however there was a decline in KAP over time. For sustaining these gains over the long term requires ongoing support, reinforcement, and integration of PC principles into everyday practice. The findings underscore the need for ongoing education and training initiatives to address the challenges and ensure that nurses can consistently apply PC principles across diverse clinical settings.
Supplemental Material
Supplemental Material - Long-Term Impact of the End-of-Life Care Nursing Education Consortium on Knowledge, Attitudes, and Practice (KAP) of Indian Nurses Working in Non-Palliative Care Settings: A KAP-GAP Analysis
Supplemental Material for Long-Term Impact of the End-of-Life Care Nursing Education Consortium on Knowledge, Attitudes, and Practice (KAP) of Indian Nurses Working in Non-Palliative Care Settings: A KAP-GAP Analysis by Mayank Gupta, Gegal Pruthi, and Karamjot Singh in American Journal of Hospice and Palliative Medicine®
Footnotes
Acknowledgments
We are grateful to the following for their contributions to this project: Dr Brijesh Garg, Mr. Narender Kumar, Mr Attar Singh, Mr. Shanker Lal.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
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References
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