Knowledge, attitude, and practice towards neonatal palliative care of medical and nursing staff in an Indian context: A web-based survey

INTRODUCTION

European Association for Palliative Care (EAPC) defines palliative care as the care of a patient whose disease is not responsive to curative treatment.^[1] Catlin and Carter defined neonatal palliative care (NPC) as the holistic and extensive care of a neonate who is not going to recover.^[2] It is a comprehensive perspective incorporating physical, psychosocial, and spiritual care and pain alleviation by multidisciplinary care in hospitals, hospice, and communities.^[3] NPC involves prevention of pain, family support, and involvement of family in decision-making,^[4] and should be considered in cases where the benefits of active treatment are insignificant or negligible. Advances in the field of neonatology have led to an increasing survival of neonates with critical and incurable diseases of which some may warrant palliation. Despite the imperative role of palliative care in neonates, there is a paucity of guidelines for its implementation. Haug et al. found that nearly half of neonatal intensive care unit (NICUs) in the United States did not have NPC guidelines.^[5]

A family-centered integrative model of care promotes family bonding while actively supporting, educating and entitling the family to act as their child’s proponent. This collaborative approach helps in the bereavement process, while minimizing futile invasive interventions and meeting the evolving biopsychosocial needs of the patient and their families. Palliation has not been consolidated into medical and nursing education and training and enhanced efforts should be taken to promote an interdisciplinary approach to end-of-life decision-making.^[6]

Neonatal deaths account for one-third of all childhood mortality with prematurity and congenital malformations being common causes.^[7] It is estimated that approximately 18% of all infants are admitted in the NICU due to a life-threatening condition.^[8] American Academy of Pediatrics upholds the initiation of palliative care and its incorporation over the course of disease to improve quality of life and to facilitate informed decision making.^[9]

Despite these recommendations, there are inconsistencies in the delivery of NPC.^[10-12] Cortezzo et al. found that end-of-life practice was variable among various NICUs,^[10] with low provision of palliative care services even in institutions with established NPC standards.^[11]

The Neonatal Palliative Care Attitude Scale (NiPCAS) survey was developed to assess institutional and individual barriers and facilitators of palliative care.^[12] Facilitators were as follows: support for NPC by medical professionals; the ability to express opinions and beliefs; counseling and support for newborn’s family; and guidelines to support practice.^[12] Barriers identified were inadequate staff; a physical environment not conducive to palliative care; and technological imperatives and parental demands.^[12] The NiPCAS survey has also been done on neonatal nurses in the United States,^[13] Taiwan,^[14] and Iran^[15] with similar findings to the original study. Kyc et al. used NiPCAS survey to compare palliative care perceptions of both doctors and nurses and it has been found to be appropriate to use for a broader population of caregivers.^[16]

A survey of pediatric critical care professionals revealed that physicians were less comfortable with palliation, communication, and pain relief practices than nurses; although there was no difference in the psychosocial aspects of palliative care.^[17] In another study, both doctors and nurses felt an absence of societal support for palliative care; even though nurses reported greater impediments at the system level.^[18]

A multidisciplinary and combined effort is required to effectuate NPC. To the best of our knowledge, use of NiPCAS to compare palliative care perceptions of both medical providers and nurses in low- and middle-income countries (LMICs) has not been previously studied.

This study was conducted to determine the knowledge, attitude, and practices of NPC by the medical and nursing staff involved in neonatal care through a web based survey.

MATERIAL AND METHODS

We conducted a questionnaire-based prospective cross-sectional study over a duration of 1 month by collecting data from the NiPCAS survey. All medical personnel (attending physicians, Faculty, pediatric junior and senior residents, registered nurses and nursing students) working in the Department of Pediatrics and involved in Neonatal care were invited to complete the survey which was distributed electronically; with the online version being hosted and stored on Google forms. The survey was conducted over a 1-month period in January 2023.

The NiPCAS survey includes 26 statements on a Likert scale with the response coding being- strongly disagree = 1, somewhat disagree = 2, unsure (neutral) = 3, somewhat agree = 4, and strongly agree = 5. Kain et al. had used exploratory factor analysis to identify subscales of the instrument: organization, resources, and clinician, which we also calculated for our study.^[12] The content of the NiPCAS survey was assessed by our organization’s NPC committee.

RESULTS

Of the 93 neonatal medical and nursing staff invited, 87 participants took part in the survey, amounting to a response rate of 93.5%. Fifty eight participants were doctors (66.7%) and 29 (33.3%) were nurses, among whom 49 doctors (56.3% of the study population) were undergoing training as junior and senior residents and 9 (10.3%) respondents were consultant pediatricians (faculty). Amongst the nursing staff, 24 (27.6%) were nursing graduates and 5 (5.75%) were nursing students. Around 42.28% had a work experience of less than 1 year, 26.02% had an experience of 1 to 4 years, 4.88% had an experience of 5 to 10 years, while 26.83% had worked for more than 10 years. Nearly a fourth of the respondents had an experience of more than 10 years in their current role. Table 1 demonstrates the demographic characteristics of respondents.

Most respondents agreed to have experience with NPC, with nursing staff having more experience as compared to medical staff taking care of dying neonates (P = 0.195). Almost all of the respondents agreed that palliative care was necessary in neonatal nursing and medical education; but less than half had received education for the same. Table 2 shows the survey questions and their responses.

DISCUSSION

A study from Ethiopia indicated that there was a low level of knowledge of palliative care among nurses, thereby necessitating education and training in this aspect.^[19] In our study, both groups strongly agreed about the necessity of NPC education, although the level of agreement of doctors (mean score 4.67 [0.68]) was significantly more than that of the nurses (3.8 [0.99]) P < 0.0001. Fischer et al. found that anxiety levels were higher in pediatric residents with suboptimal knowledge about palliative care.^[20] More doctors (mean score 3.21 [1.1]) reported having received education on palliative care than nursing staff (mean score 3.1 [1.06]) (P = 0.655). Both medical and nursing staff agreed that the physical environment of the NICU was ideal for providing palliative care (total mean score 3.38 [0.91]).

Pain management is a part of comfort care for critical babies and should be addressed. In our study, both groups weakly agreed that pain relief is a priority for dying neonates, although doctors prioritized pain relief more than nurses (P = 0.019). This finding is similar to the study by Kyc et al.^[16] and may be due to the differences between nursing and medical working culture.

CONCLUSION

We identified potential facilitators and barriers for the provision of NPC. Efforts should be taken to strengthen facilitators, while simultaneously mitigating barriers. Health personnels and parents can collaborate on the goals of palliative care in each individual case. Perceptions of NPC between medical and nursing personnels are both identical and divergent.

Palliative care education is a necessity; education of staff could reinforce support of palliative care. Recommendations for future research would be to compare medical and nursing staff ’s perceptions about NPC from multiple institutions and to study the effects of an educational intervention on the delivery of NPC.