Abstract
Background:
Education and training are very critical to development of high-quality neonatal palliative care. However, little investigation has been done into Taiwanese neonatal clinicians’ educational needs regarding neonatal palliative care.
Purposes:
The purposes of this study were to characterize and identify neonatal clinicians’ educational needs regarding neonatal palliative care.
Methods:
A cross-sectional descriptive surveyed method via a self administered questionnaire was used in this research. Thirty neonatologists were recruited by a convenience sampling and 30 nurses were recruited by a randomized sampling.
Results:
Out of sixty neonatal clinicians’ survey, few had received the education in neonatal palliative care. Most reported minimal training in, experience with, and knowledge of neonatal palliative care. For neonatologists, two of twelve most strongly-felt educational needs were “discussing palliative care and ethical decision-making with parents” (70%) and “informing parents the poor progress in neonates” (63.3%). In contrast, neonatal nurses wanted more training regarding pain control (50%). Communication skills, including the discussing poor prognosis, bad news, and code status and talking with neonates about end-of-life care, were the educational need most commonly felt by both neonatologists and nurses.
Conclusions:
Survey data from neonatologists and neonatal nurses in Taiwan indicate a need for further training on a range of neonatal palliative care competencies.
Keywords
Introduction
Neonatal palliative care is an emerging field of care for life-limiting and life-threatening conditions of neonates treated and cared for by neonatologists and neonatal nurses. 1 Although palliative care is important for dying neonates and their families, it is not generally available in Taiwan. A previous study revealed several barriers to application of neonatal palliative care practices, the foremost being a lack of training for neonatal clinicians. 2,3
Palliative care education for health care providers cannot be seen simply in terms of skills and knowledge but should include guidance on the attitudes and behaviors which should accompany specific skills and knowledge. Neonates occupy a particular social position as numbers of an emerging family and the levels of prognostic uncertainly predictable in this population. 3 Therefore, education for neonatal palliative care requires that attention be paid to a number of issues unique to this population and to the neonatal professionals providing their care.
Neonatal palliative care is the planning and provision of comfort care for the neonate and his or her family during life and end-of-life (EOL) periods. 4 Palliative care is not simply about care for the dying but is also about providing holistic care to both neonates and families from the time of intensive care or discovery of the life-limiting nature of an illness. 5 Moreover, palliative care for neonates is unique and specific, requiring special skills, organization, and resources which are different from those for adults. Unlike older children with life-limiting conditions, the infants are unable to communicate their needs and feelings and require considerably more technical support to remain stable. Symptom management and care for dying infants are often more technology dependent. 6 Therefore, caring for dying neonates and their families requires expertise in symptom management and deft communication skills involving extremely sensitive issues. 7
In previous studies, neonatologists tended to be less involved in EOL care compared to nurses. 8,9 Researchers believe that most conflicts between physician and nurse groups may result from differing perspectives on the nature of palliative care. 10 In order to solve these conflicts, both doctors and nurses should be adequately trained in neonatal palliative care according to their unique educational needs. 1,8 In Taiwan, specific evidence on neonatal palliative care education is limited and survey data from neonatal clinicians indicate minimal training, experience, knowledge, competence, and comfort in the areas of neonatal palliative care. 2 To develop appropriate educational content for Taiwanese clinicians, the educational needs of both neonatologists and neonatal nurses must be first identified. 2,11
Research Purposes
The purposes of this study included (1) analyzing the extent of training and the EOL caring experiences of neonatologists and neonatal nurses, (2) identifying desired topics of neonatal palliative care education, and (3) identifying the differing educational needs of neonatologists and neonatal nurses.
Methods
A cross-sectional descriptive survey method using a self-administered questionnaire was used in this research. The research questionnaire was adapted from a previous study. 2 An overall content validity index (CVI) was used to determine the validity of the structured questionnaire (CVI = .86), revealing high content validity. 2 The experience with caring for dying neonates (CVI = .8) and the ranked importance (CVI = .9) subconstructs revealed high content validity as well. 2 The research questionnaire comprised 4 parts. The first part asked for basic demographic information of research participants. The second part asked for the participants’ educational background in neonatal palliative care. The third part quantified the participants’ experience with providing various aspects of EOL care (1 = never, 2 = rarely, 3 = sometimes, 4 = often, and 5 = always). The fourth part asked participants to rate according to importance (1 = most important to 12 = least important), a list of 12 educational issues related to neonatal palliative care. Participants were invited to state their reasoning for their rankings in the comments section.
Research Participants and Settings
Research participants were neonatologists and neonatal nurses recruited from neonatal intensive care units (NICUs) at 4 hospitals in 3 cities in central and northern Taiwan. Because the number of neonatal nurses was more than neonatologists working in the NICU, research samplings included 2 sampling methods. Thirty neonatologists were recruited by a convenience sampling from 4 NICUs and 83 neonatal nurses were recruited by a randomized sampling from 4 NICUs.
The study was approved by the Human Rights Committee of Taichung Tzu Chi Hospital in Taichung City, Taiwan. Participation was voluntary and participants signed a consent form before answering the research questionnaire.
Data Analysis
Research data were collected between December 2012 and November 2013. Statistical analysis was performed using the statistical package SPSS (Version 18, SPSS, Chicago, Illinois). Descriptive statistics including means, and frequencies of item responses were conducted. The independent t tests were used for 2-group comparisons.
Results
Sixty clinicians completed the questionnaires. In 4 research hospitals, all neonatologists were invited to participate and 30 neonatologists (80% response rate) were recruited by a convenient sampling method. In all, 30 neonatal nurses were recruited from 83 neonatal nurses in 3 research hospitals by a random sampling method in 4 research hospitals. In all, 5 neonatologists and 15 neonatal nurses stated their reasons for their rankings of desired educational topics.
Demographic Data
Most participants were between 30 and 39 years with a mean age of 36.6 years (standard deviation [SD] = 1.23). The length of most participants’ working experience in NICUs was between 1 and 5 years (mean = 4.68). Most neonatologists’ working experience in NICUs was between 1 and 5 years (n = 22, 73.3%), but nurses’ working experience was spread between 1 and 5 years (n = 17, 56.6%) and 6 and 10 years (n = 8, 26.7%). Most participants were married but had no experience raising children. A majority of participants agreed that personal religious beliefs may affect their perception of neonatal palliative care practice. Table 1 shows this demographic data.
Demographic Data of Participants.a
Abbreviation: NICU, neonatal intensive care unit.
aN = 60, physicians = 30, and nurses = 30.
Educational Background
The majority of participants reported having received training in palliative care. However, most reported no access to training or has not been well trained in pediatric palliative care (neonatologists: 10%, nurses: 13.3%; Table 2), and few participants believed their training was sufficient for providing neonatal palliative care (mean = 2.75, SD = 0.794; Table 2).
Experiences of Education Regarding Palliative Care.
Abbreviation: SD, standard deviation.
aStrong disagreement = 1, Disagreement = 2, Unsure = 3, Agreement = 4, and Strong agreement = 5.
Experience With Providing EOL Care for Neonates
The majority of participants reported little experience discussing with parents the option of palliative approach for their terminally ill neonates (neonatologists, the median number = 2.4; nurses, the median number = 1.97).
Neonatologists reported more experience than nurses with discussing the palliative approach with parents (t = 2.298, P = .023). Neonatal nurses reported less experience than neonatologists with discussing code status with parents of terminally ill neonates (t = 2.264, P = .039) and holding a family conferences to discuss life-threatening illness (t = 2.697, P = .008). Most participants also reported little experience handling pain management for dying neonates (neonatologists, mean = 2.37, nurses, mean = 2.15). Table 3 displays participants’ experiences caring for dying neonates.
Experiences of Providing End-of-Life Care for Dying Neonates.
Abbreviation: SD, standard deviation.
Educational Needs of Neonatologists and Nurses
Twenty-one (70%) neonatologists ranked “discussion the cardiopulmonary resuscitation (CPR) procedure with families and helping in ethical decision making” as the area in which they most desired further training. Their second most highly ranked need was “informing parents and families of progress in neonates” (n = 19, 63.3%). On the other hand, the area of “dealing with feelings of staff members” (rank 10-12: 53.3%), “dealing with one’s own feeling” (rank 10-12: 66.7%), and “counseling families about death and dying” (rank 10-12: 53.3%) were ranked as the bottom 3 in importance. Table 4 presents the rank-order importance listing by neonatologists.
Rank-Order Importance Listing of Neonatal Palliative Care Educational Topics.a,b
aNeonatologists = 30.
bRank 1-3 = most important to Rank 10-12 = least important.
Nurses ranked “pain control” (rank 1-3: 50%) as the area in which they most desired further training. On the other hand, nurses reported that dealing with their own feelings and colleagues’ feelings as well as building supportive relationships were least important. Table 5 shows the educational needs of neonatal nurses.
Rank-Order Importance Listing of Neonatal Palliative Care Educational Topics.a,b
Abbreviation: CPR, cardiopulmonary resuscitation.
aNurses = 30.
bRank 1-3 = most important to Rank 10-12 = least important.
Six participants reported the following comments for their rankings of educational needs:
Discussion
Participants in our research were younger and had less NICU work experience than did the neonatal clinicians in other research. 1,12 Previous research has found that the majority of more senior neonatal clinicians, that is, those older than 40 years, reported significantly more positive attitudes toward neonatal palliative care than did younger clinicians. 12,13 Our research suggests that younger clinicians’ lesser experience with neonatal palliative care may exacerbate stress and reduce quality of care.
Most participants also reported their religious belief affected their perception of palliative care. Therefore, we propose the neonatal palliative care education should address conflicts among different religious beliefs.
Analysis of Educational Experiences Data
Since neonatology is the small division in the pediatric department of a hospital, the educational needs of neonatal clinicians may easily be ignored by the formal medical and nursing educational systems. Few participants in our research had received training in neonatal palliative care either during their initial education or through continuing education, and few considered their current level of training adequate (Table 2). Other studies have confirmed a great need among neonatologists and neonatal nurses for continuing education and guidance on how to provide optimum neonatal EOL care. 1,14 Neonatal palliative care training for neonatologists and neonatal nurses is an urgent need which, unfortunately, is easily overlooked.
Experience Caring for Dying Neonates
Most neonatologists had more experiences than did nurses with discussing negative medical issues and the palliative care approach with families of terminally ill neonates. In addition, neonatologists more often than neonatal nurses reported having conducted family conferences to discuss life-threatening illness. This illustrates the importance of neonatologists’ role in the communication of bad news to parents. Epstein 9 has also found that most physicians tend to be more deeply involved than nurses in decision making regarding EOL care. Research of Epstein may explain our finding that neonatologists reported “discussion with families of CPR procedures and ethical decision making” as the area in which they most desired further training.
Although relief of physiological pain and suffering for dying infants is an important issue in the palliative care, 15 our research found that most participants have little experience providing pain control and symptomatic care for terminally ill neonates. Further training for neonatal clinicians should emphasize pain and other symptoms’ assessment and management. 8,16
Analysis of Educational Needs
In our research, neonatologists rated “ informing parents the neonates’ progress,” “dealing with angry families,” and “discussing the CPR procedure and assisting in ethical decision making” as areas in which they most desired training (Table 4). Neonatologists often provide families with explanations of their infants’ treatments and conditions, helping parents understand the different aspects of care needed for making informed choices (Table 3). Therefore, it is reasonable that they would feel a need in this area. Our findings are similar to those of previous studies. 8,17,18
As shown in Table 4, neonatologists seem not only to ignore their own negative feelings regarding the death of neonates under their care but to give little attention to counseling families about death and dying (Table 4). This finding is similar to that of study of Barr. Barr 19 evaluated the relationship between neonatologists’ personal fear of death and their attitude toward hastening death for the purpose of relieving pain and suffering in dying neonates in Australia and New Zealand. Barr’s study described neonatologists’ personal fear of death and their tendency to hasten death. Their feeling may influence the choices of EOL decisions for dying patients. 18 Other studies have also found that neonatal professionals vary considerably in their attitudes regarding the value of life and that clinicians’ attitudes were reflected in their practices. 8,20 –23 Therefore, improving neonatal clinicians’ attitudes and beliefs regarding EOL care is equally important with other neonatal palliative care educational items. 15 Neonatal palliative care education and training should include guidance on the attitudes and behaviors to be exhibited when employing the specific palliative care skills and knowledge. 9
Although most neonatal nurses rated “pain management” and “nursing care for other symptoms” as desired learning topics, neonatologists did not concur. Compared with previous studies in other countries, 7,8,17 Taiwanese neonatologists seemed to place less importance on “pain and other symptom managing for dying neonates” in Taiwan (Table 4). The majority of dying neonates are not medicated for pain during the dying process. 23,24 We hypothesize that neonatologists in Taiwan may be concerned about the legal and ethical issues surrounding the use of pharmacologic pain management for dying infants. 23 Therefore, the neonatal palliative care educational curriculum should cover these ethical and legal issues.
On our questionnaire, 1 neonatologist explained in the comments section that he rated “pain and other symptoms management” as highly desired educational issue because he felt that management pain and other symptoms may comfort suffering families. Indeed, the greatest concern expressed by parents of dying children is that their child will suffer when life support is removed, 25 and this respondent’s comment clarifies the connection between these 2 aspects of neonatal palliative care.
As we know, neonates often have pain and discomfort at the EOL. 23,26 When death is inevitable, experts suggest that the priority must shift to provide adequate pain relief and comfort measures. 25 Experts in neonatology have advocated for the importance of a good death and free from avoidable distress and suffering. 3,27 However, the result of research indicates that education is urgently needed to change and improve neonatologists’ attitudes regarding pain management care for dying neonates in Taiwan. 2 Caring for dying neonates in an NICU requires expertise in pain and symptom management as well as deft communication skills involving extremely sensitive issues. 7 But, unfortunately, neonatal professionals do not feel adequately trained in palliative care. There is an urgent need for a neonatal palliative care curriculum for neonatal clinicians based on their educational needs.
Limitations
As with all surveys, the results of research were subject to self-reporting and responder bias. Little is known about nonresponders. Although the needs assessment survey was semi-closed questions, most participants did not write comments explaining their responses. We designed the needs assessment survey based on the literature; however, the rank-order list did not allow the participants to write in additional topics they would like to have covered.
Conclusion
Neonatal nurses and neonatologists have identified lack of education as an important barrier to providing EOL care. 28 In this article, we discuss the importance of neonatal palliative care education that reflects differing needs between neonatologists and nurses. This study identified the educational needs of neonatal professionals in Taiwan regarding neonatal palliative care and generated data that will facilitate the planning of specific educational interventions for these clinicians.
Footnotes
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.