RESEARCH ARTICLE Open Access

Palliative care in the neonatal unit:neonatal nursing staff perceptions offacilitators and barriers in a regional tertiarynurseryMeegan Kilcullen1* and Susan Ireland2,3

Abstract

Background: Neonatology has made significant advances in the last 30 years. Despite the advances in treatments,not all neonates survive and a palliative care model is required within the neonatal context. Previous research hasfocused on the barriers of palliative care provision. A holistic approach to enhancing palliative care provision shouldinclude identifying both facilitators and barriers. A strengths-based approach would allow barriers to be addressedwhile also enhancing facilitators. The current study qualitatively explored perceptions of neonatal nurses about facilitatorsand barriers to delivery of palliative care and also the impact of the regional location of the unit.

Methods: The study was conducted at the Townsville Hospital, which is the only regional tertiary neonatal unitin Australia. Semi-structured interviews were conducted with a purposive sample of eight neonatal nurses. Thematicanalysis of the data was conducted within a phenomenological framework.

Results: Six themes emerged regarding family support and staff factors that were perceived to support theprovision of palliative care of a high quality. Staff factors included leadership, clinical knowledge, and morals, values, andbeliefs. Family support factors included emotional support, communication, and practices within the unit. Five themesemerged from the data that were perceived to be barriers to providing quality palliative care. Staff perceived education,lack of privacy, isolation, staff characteristics and systemic (policy, and procedure) factors to impact upon palliative careprovision. The regional location of the unit also presented unique facilitators and barriers to care.

Conclusions: This study identified and explored facilitators and barriers in the delivery of quality palliative care forneonates in a regional tertiary setting. Themes identified suggested that a strengths-approach, which engages andamplifies facilitating factors while identified barriers are addressed or minimized, would be successful in supporting qualitypalliative care provision in the neonatal care setting. Study findings will be used to inform clinical education and practice.

Keywords: Palliative care, Neonatal, Facilitators, Barriers, Regional location, Qualitative

BackgroundNeonatology has made significant advances in the last30 years. Surfactant therapy, improved ventilators andventilation strategies, improved surgical techniques andparenteral feeding have enabled the survival of vulner-able babies [1, 2]. Despite the advances in treatments,not all neonates survive and a palliative care model is

required within the neonatal context. Death on the neo-natal unit may occur when intensive care support iswithdrawn, there is a conscious limitation to the escal-ation of intensive care, or the baby cannot be kept alivedespite all attempts to continue care [3, 4]. Australiandata suggests that three quarters of deaths in the neo-natal context occur after intensive care is withdrawn [5].US data shows similarly high levels of withdrawal as amode of death, particularly in babies with congenitalanomalies, whilst withholding care is more common inextremely preterm babies.

* Correspondence: meegan.kilcullen@jcu.edu.au1College of Healthcare Sciences, James Cook University, Townsville, QLD4811, AustraliaFull list of author information is available at the end of the article

© The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Kilcullen and Ireland BMC Palliative Care (2017) 16:32 DOI 10.1186/s12904-017-0202-3

The aims of palliative care in the neonatal context areto prevent and relieve pain and suffering of neonatesand provide support for families. Such care includesplanning with the family about the practicalities of thedeath and continuing family support after the baby dies[6, 7]. The timing of withdrawal must allow time for par-ents to prepare for the death of the baby but bebalanced against the suffering of the baby [8]. The obli-gations for nurses and doctors is to provide options forparents, preparing them for the death, providing physicalsupport to the family while providing comfort to thebaby, advocating for the family and providing emotionalsupport [8]. The basic elements for palliative care in-clude the need for warmth, dignity, human contact andpain relief for the neonate and neonatal nurses are at theforefront of such care in the neonatal unit.Limited research has been conducted that explores

neonatal nurses’ perspectives of providing palliative care[9–13]. A systematic review identified “attitudinal, clin-ical, educational, institutional, regulatory, and financial”barriers to providing palliative care [10]. Specifically,barriers included nurses' values and moral dilemmas,beneficence and nonmaleficence, nurses' exposure todeath, emotional control and protection, stress, grief,lack of optimal environment, and lack of education inpalliative care principles. A subsequent Australian studyidentified facilitators of quality palliative care that in-cluded a health care team which is supportive of eachmember’s opinions and beliefs, availability of counselingfor caregivers, the use of clinical guidelines and theprovision of adequate support for parents [12]. Barrierswere found to be a poor physical environment, techno-logical imperatives and parental demands to continuetreatment and concerns about harming the infant orcontributing to suffering [10]. Similarly, barriers includedthe negative impact of lack of education including inef-fective communication, and the assessment of needs andimplementation of palliative care including a lack of clin-ical guidelines for providing palliative care [13].Other research in the Australian context identified

barriers to palliative care in neonatal nursing related tostaffing, the environment and the technological impera-tives [11]. Inadequate staffing was identified where thelabour intensive nature of palliative care was not ac-knowledged by the organizational structures and insuffi-cient staff was available to help nurses providing thecare. The environment of the unit negatively impactedcare when the physical structure was inadequate andprivacy and comfort lacking for families. Additionally,moral distress was reported by nurses when they per-ceived an escalation of treatment via the use of technol-ogy in a futile situation. Moral distress was a result oftreating a neonate with no hope of survival and contrib-uting to false expectations of the parents. Moral distress

has also been identified when nurses perceived contin-ued intensive care was being provided which was not inthe best interests of the neonate [13].Chen and colleagues [9] in Taiwan, used a question-

naire approach to explore the attitudes and beliefs ofneonatal nurses towards the dying neonate and to deter-mine the influence of these on nurses’ attitudes towardspalliative care. Similar to other studies [10, 11], barriersto quality palliative care included the lack of informationto the parents about their options for palliative care, andnurses’ perception that they were not permitted to voiceopinions about palliation. Nurses perceived a lack of re-sources and also having little palliative care education orguidelines for providing care. A lack of education fornurses has also been noted in the Australian [11, 12]and United States contexts [13]. The nurses perceivedan overuse of technology to keep babies alive and paren-tal opposition to palliation [12]. Cultural influences werenoted in this study including a majority of participantswho believed in transmigration of the soul, and a thirdwho believed that palliative care was inappropriate asneonates are at the beginning of life [9].Cultural implications of palliative care have been iden-

tified within New Zealand Maori and Australian Indi-genous communities [14, 15]. While these studies werenot in the neonatal context, important considerationsfor delivering culturally responsive palliative care arehighlighted. For example, there are cultural consider-ations regarding the level of inclusion of family membersin planning palliative care, which family members areappropriate to consult [15], and the impact of percep-tions of death and dying and intervening in these pro-cesses [9, 14]. As others have identified [9], it isimportant to consider the influence of cultural influ-ences upon perceptions of providing palliative care par-ticularly at the beginning of life.A holistic approach to enhancing palliative care

provision should include identifying both facilitators andbarriers. Previous research has focused on the barriers ofpalliative care provision [9–13]. A strengths-based ap-proach would allow barriers to be addressed while alsoenhancing facilitators of palliative care. It is also import-ant to note that previous studies have also relied onfocus groups [12], secondary analysis [10, 11, 13] orquestionnaire data [9] with little individual qualitativeinterview-based studies conducted. The current studyqualitatively explored perceptions of neonatal nursesabout facilitators and barriers that impact upon the de-livery of palliative care. Such information is key to plan-ning, implementing and evaluation strategies to harnessfacilitators and reduce effect of barriers in delivery ofquality care. Further, the study explored the impact ofregional location of the unit upon delivery of qualitypalliative care.

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MethodThe study was conducted at The Townsville Hospital(TTH), Australia. TTH Neonatal Unit is the onlyregional tertiary unit in Northern Australia and has anextensive rural, remote and extremely remote catch-ment area. It serves an area of approximately 500 000sq. km. Babies are also referred for surgery, excludingcardiac surgery. In 2015, 255 patients were admitted forintensive care, with 7 deaths from complications ofprematurity, congenital anomalies, infections or hypoxicischaemic brain injury. Approximately 75% of neonatesare inborn and 25% are retrieved from areas acrossNorth Queensland. The study was conducted within aphenomenological framework that seeks to understandindividuals ‘lived experience’ of providing palliative carein a neonatal unit.

ParticipantsA purposive sample of eight neonatal nurses with ex-perience in providing palliative care participated in thestudy. Eligibility criteria included part-time and full-timeneonatal nurses who had experience providing palliativecare in the neonatal context. The participating nurseshad more than 5 years of neonatal nursing experience,and were registered nurses. They represent a varied skillmix. No further demographic information was collected.

MaterialsInterviews were guided by open-ended questions regard-ing the delivery of palliative care in a neonatal and re-gional context. Nurses were asked about theirperceptions of barriers and facilitators of palliative carein the unit, and whether the unit’s regional location im-pacted upon the delivery of palliative care. Questionsincluded “What is ‘end-of-life- care?”; “What is good ‘end-of-life’ care?”; “What promotes good ‘end-of-life’ care?”;“What do you think we do well on this Unit?”; and “Doyou think our Unit being in a regional area affects our pal-liative care?”. After completion of the each interview, par-ticipants were offered an opportunity to add any furtherinformation about their experiences of neonatal palliativecare in order to capture further relevant information.

ProcedureThe study was promoted via an email through the NurseUnit Manager to all nursing staff and snowball recruitingwas used to encourage participation. Semi-structured in-terviews were conducted with nurses at a location oftheir choice. Verbal and written consent was also ob-tained to conduct and digitally audio record the inter-view. Data was analysed within an InterpretativePhenomenological Analysis (IPA) framework [16]. IPAis a qualitative research methodology which describesthe ‘lived experience’ in order to understand people’s

perceptions of the study subject. Within the IPA frame-work, a 6 stage exploratory thematic analysis processwas conducted as described by Braun and Clarke [17].The thematic analysis was conducted using an iterativeprocess in order to develop codes, categories, subcat-egories and themes. Results of this study meet Yardley’squalitative research validity criteria of 1) sensitivity tocontext; 2) commitment and rigour; 3) transparency andcoherence; and 4) impact and importance (see [16] forreview of IPA and validity criteria). Themes were Ethicsapproval for the study was obtained from the localhuman research ethics committee (13QTHS84).

ResultsResults are presented within a framework of the facilita-tors and barriers of quality palliative care, followed by theeffects of regional location and culture on palliative care.

Facilitators of good careSix themes were identified regarding family support andstaff factors that were perceived to support the provision ofquality palliative care. Staff themes included leadership,clinical knowledge, and morals, values, and beliefs. Familysupport themes included emotional support, communica-tion, and practices within the unit (See Fig. 1). Each of thesethemes includes subthemes that impact upon the deliveryof quality palliative care.

Staff attributesLeadershipWithin the leadership theme, 6 subthemes were identi-fied –staff suitability and experience, mentorship, com-munication between staff members, skill mix, andsupporting staff. Quality palliative care was deliveredwhen nursing leadership in the unit understood the in-terrelated nature of these factors when allocating andsupporting staff during the palliative period for an infantand family. For example, leadership recognition of staffwho were suitable and experienced in delivering pallia-tive care was facilitated by those who self-identified asone nurse reported “I mean you have to be the type ofperson who will actually handle that and will be able tofacilitate it and look after mentally [self and family]”(P 8). Further, staff were considered suitable and ex-perienced when “people who sort of do read thingsand don’t shy away from the opportunities…and ifthey seem to be continue to be interested then youknow that they’re not shy of it” (P2).Leadership in the palliative care also reflected the posi-

tive influence of mentorship of staff during the palliativeperiod. Mentorship was described by nurses as a collab-orative way in which to engage with more experiencedstaff and to navigate their own emotional experiencesduring the palliative process.

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My mentorship [as clinical lead nurse] with someoneelse if they’re doing end-of-life is just being able toprovide that staff member with anything they need.You know, if they’re doing the end-of-life care andI’m just supporting them as a team lead, “what doyou need?” (P2)

Effective leadership in the palliative period also recog-nised the skill mix of the staff. Nurses perceived that goodleaders were able to identify the skill mix appropriate forboth staff and family needs during this period. As one nursereported, “I think sometimes we do really well like wherewe do think about the families and allocations” (P5).Effective leadership facilitated clear communications

between staff members during the palliative period toenhance care. Clear communication allowed staff mem-bers to provide integrated and collaborative care to theinfant and families. As one nurse noted:

Communication, most definitely…between medical,whatever hospital staff are involved. Definitelybetween the family and Allied, and I’m talkingAllied Health too, whatever hospital people areinvolved that needs… you and whoever, socialworker or whatever. (P3)

Clinical knowledgeWithin the theme of clinical knowledge, 3 subthemesemerged – education, adapting and tailoring care, andmedical support. Respondents reported that palliativecare was facilitated by the depth of clinical knowledgeof nursing staff through ongoing education. Thiseducative process supported staff to adapt and tailorcare to infants and families’ needs. As one nursereported:

I think mostly we’ve got a unit where there’s a lot ofknowledge around and so we can inform the parents,consultants down too, but mostly the senior nurses I’dsay. We’ve got a lot of junior ones but we’ve got a lotof knowledge about what can happen and explain toparents what can happen. (P1)

Nurses also acknowledged the family-centred medicalsupport by consultants during the palliative care period.For example, one nurse reported that consultants weregood at “explaining things easy for them to understand”(P7), however, the hierarchy was also noted:

you know what they, they obviously dictate to us to adegree what happens with medication, what happens

Quality Care

Staff

Leadership

Clinical Knowledge

Morals, Values & Beliefs

Family Support

Emotional Support

Communication

Practices

Fig. 1 Facilitators of quality palliative care – staff and family support themes

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with IV lines, what happens with ventilation, but theyare also very good at listening to parents I think too. (P3)

Morals, values and beliefsWithin the theme of morals, values and beliefs, self-re-flection emerged as a key subtheme for delivering qualitypalliative care. Nurses reported the need to critical self-reflection about one’s own morals, values and beliefswhen providing quality palliative care. Many expressedthe need to develop an awareness of their own world-views through self-reflection as these had the potentialto impact upon their provision of palliative care. Thiswas encapsulated by a nurse who stated “I don’t thinkyou can force your values or put your values onto some-one else but I guess your personal approach” (P5).

Family supportWithin this central theme, family support delivered bystaff, the themes of emotional support, communication,and practices were identified. These factors reflected staffabilities to use their professional skills and knowledge tosupport families during the palliative care period.

Emotional supportWithin this theme, 4 subthemes were identified– attunement to family, identifying bonding opportun-ities, the gift of time, extended family support. Nurseswere adamant about the crucial role of emotional sup-port for families during the palliative care period. Theyperceived their role to be that of facilitators of familyconnectedness during this distressing time. Nurses re-ported attunement to the family’s needs and creatingopportunities for families to bond with their infants. Anurse stated simply that “these parents just need to beable to do things that they would do with their baby if itwas at home” (P 4).Nurses’ attunement to the infant and families during

palliative care facilitated bonding opportunities. Under-standing the needs of the infant and families allowednurses to provide a safe environment for bonding andmemory-making.

Unfortunately we knew what the outcome wouldeventually be but it was a matter of facilitating forthat family and making sure they were supported andfelt safe enough to do that on their own, and to methat’s good end of life care. (P6)

Many nurses identified the gift of time as an importantaspect of providing emotional support to families. Nursesreported that families were caught between both bondingwith and grieving for their baby. Nurses’ capacity to protect

this time for families was perceived as important for provid-ing quality palliative care.

I guess we’re good about privacy, we’re good aboutcreating good moments for each of the families intheir own right, and we’re good about trying to valuetime, because, if anything as a practitioner, if that’swhat you can give them, that’s the maximum timewith each other. (P2)

During this time, nurses were acutely aware of sup-porting the extended family, as well as the parents ofthe infant. Often siblings, aunts, uncles, and grandpar-ents were on the unit at the end of the infant’s life.Nurses reported that this support was crucial for imme-diate emotional support of the family, but also the long-term impact of this support on the family into thefuture.

So end of life care is about everyone, getting thewhole family involved not just the parents, it’s notexcluding anyone who is directly involved with thatbaby. (P8)

Communication to parentsWithin this theme, four subthemes were identified –clear information, support during decision-making, advo-cacy for infant, post death information.Nurses reported good family support was enhanced

by providing clear information to families throughoutthe palliative care period. Clear information includedbeing honest and truthful with families about the likelyprocess of end-of-life for their infant, and providingeducation to parents to support the decision-makingprocess. For example, one nurse reported that “I’m veryhonest with families. That’s a personal professionalchoice I make… making sure to be careful with yourword choice” (P2). Another nurses stated that support-ing families was enhanced “by telling them the truth[about their infant’s condition]” (P4), “empowering theparents to make…that decision at the end of the daybut without forcing a particular option on them” (P5)and “the number one thing for us is to support themand help them in those decisions” (P6).Nurses also reported that good family support was facili-

tated by being an advocate for infant. While many nursesacknowledged the importance of the family during thisperiod, primary nursing of the infant as the patient wasalso in the forefront of their minds. For example, onenurse reported, “thinking primarily is the patient inpain?…what are we asking the patient to do as far as qual-ity of life for the time that the family needs to be able toadapt to the circumstances (P2).

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Family support was also provided by nurses throughprovision of post death information. One nurse re-ported that written information was important whensupporting parents after the death of their infant “there’squestions and things that parents will ask, I can antici-pate and I’ve already got the answers for them” (P6).

PracticesWithin this theme, four memory-making practices wereidentified that were perceived to contribute to good fam-ily support during the palliative care period – meaning-making (photographs, memento box, memory book, andceremony). Nurses also acknowledged the importance ofcommunity support to the provision of resources forthese practices.Nurses reported that the photographs provided by the

unit were particularly important for meaning-makingduring and after the palliative care period. As one nursedescribed, “photographs, lots of photographs and yes justtry and make the families have as best an experiencethey can in a bad situation” (P1). Nurses also gatheredtogether items into memento boxes, such as locks ofhair and footprints, for the families, stating “I think it’simportant for that memory, the memories” (P1) “and…offering them quite a few after life memories, like thehair-clippings and memory box (P5). Nurses also spokeabout their creativity in developing memory books forfamilies about their infant. As a nurse describe “well,we’re very creative with our resources. It is nice to havethe all-in-one booklet now, that we can give families as amemory” (P2). Additionally, the capacity to offer cere-mony to families was also considered to be quality pal-liative care practice. Nurses reported that ceremoniesoffered to families did not necessarily have a religiousaffiliation. As one nurse reported, “Christenings or likename services, maybe less religious than others” (P6).Nurses also acknowledged the support of the com-

munity for the unit. Community members providedhand-made items such as clothes to be given to familiesfor their infants. Nurses reported appreciating this sup-port as they perceived it to be a means of communityacknowledgement of the difficulties of palliative care inthe neonatal unit. As a nurse stated “I think and also likepeople in the community must realise or they’ve had ithappened to them for them to make all these littledresses and then it’s so nice for the nurses to have” (P7).

Barriers to careFive themes emerged from the data that were perceivedto be barriers to providing quality palliative care. Staffperceived education, lack of privacy, isolation, staff char-acteristics and systemic (policy, and procedure) factorsimpact upon palliative care provision (see Fig. 2).

EducationStaff perceived a lack of opportunities to engage in thepalliative care process as a barrier to providing goodcare. Given the small number of palliative care cases inthe unit, it was perceived that often the most experi-enced nurses were allocated to these infants andfamilies, and that education was not provided to newstaff in order to build their skills in palliative care. Asone nurse noted “I think sometimes we don’t maybeeducate some of the new staff well enough or involvethem enough to be able to…we sort of go off the peoplewho have maybe been there a few years and are more se-nior staff” (P 5) while another stated that “I’d like toknow a little bit more about how we do things here…what the actual process is” (P 6). Another nurse statedthat suitability and experience for providing palliativecare would be enhanced “if people are more educated[so] they wouldn’t be so apprehensive about caring forbabies at the end” (P6).Further education factors included difficulties provid-

ing in-service to nursing staff. For one nurse this wasviewed as a practical difficulty of releasing staff from thefloor to attend workshops. This nurse stated “I’m soenthusiastic…I’ve tried to give in-services at work but it’sonly people [off the floor who] can come…so availabilityof staff” (P8).

Lack of privacyStaff perceived a barrier to care was a lack of privacy inthe Special Care Unit particularly in the event of adeath of a twin. For example, as nurse reported this wasa difficulty when parents wanted to reunite a twin whohad died in NICU with the other twin in Special Care.The nurse reported that this was particularly a difficultyfor other parents in Special Care, stating,” [nurse] wastaking [infant] it into Special Care to the other baby, andthe parents of the other babies were getting upset be-cause there was a dead baby in the Unit” (P4).A lack of privacy during the palliative care period and

after the death of the baby was reported by nurses par-ticularly when parents wanted to take the dead or dyinginfant out of the neonatal unit into public spaces.Nurses reported that parents often wanted to taketheir infant to the hospital gardens to experience amoment of normality. However, nurses reported thathaving these infants in public spaces often caused dis-tress in others in those public spaces stating “I knowthat [staff have] taken babies down in to the garden[but] people get upset seeing dead babies. Or dyingbabies” (P4).

IsolationNurses also perceived isolation to be a barrier to care.Nurses reported that the palliative care process was

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often hidden from view from parents and other staff inorder to protect them from the emotional distress ofdeath and dying. As one nurse reported,

The staff, unless they’re actually involved in the end-of-life care, um, often don’t know what’s going on…because I think you try and protect other people inthe unit as well. Other parents…from [the processof] dying. You’re try and protect them as well asprotect parents by giving them some sort of privacyI think. (P 4)

The perception of isolation as a barrier to care wassomewhat contrary to the perceptions of lack of privacythat were also reported. Negotiation of the balance be-tween the privacy and isolation was required by nursesin order to provide quality palliative care.

StaffBarriers to care were also reported to include the impactof nurses’ own grief and loss upon the delivery of care bynurses. Nurses reported that delivering palliative care wasemotionally draining and required self-reflection. As onenurse reported “I’ve come to understand that that is yourown personal stuff that they actually can’t deal with…grief,death and dying” (P8).

Systemic factorsBarriers to delivering quality palliative care included policyand procedure factors. At the policy level, nurses perceiveda lack of input into unit guidelines for palliative care, a lackof unit evaluation, and the need to update ideas and valuesabout care provision. As a nurse reported:

…there were six different policies…so I tried to tiethem altogether, write them into one but in a moremodern way and then they get shoved into the bowelsof the hospital and you never see them again. (P8)

Frustrations were also expressed about the lack of in-put into palliative care guidelines was also reflected inthe perception of a lack of evaluation for the palliativecare provided. A nurse noted that “I don’t think we’veever evaluated ourselves” (P4). Evaluation was also per-ceived by nurses as a transformative process for chan-ging guidelines and values of the unit that supportpalliative care. It was acknowledged that communityand parents values about palliative care had changedover time and these changes were not reflected in theunit, “We’re just doing [the same palliative care],we’ve got policy and procedures, but the individualshave changed” (P4).Procedure subthemes included lack of flexibility, dif-

fering levels of support, difficulties in skill mix that

Barriers to care

Education

Lack of Privacy

Isolation

Staff Grief & Loss

Systemic

Policy

Procedure

Fig. 2 Factors nurses reported to be barriers to good care

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interrupts continuity of care, and difficulties in staffchanging from model of care from restorative to pallia-tive care. While the policy level guidelines were per-ceived to be necessary for delivering quality palliativecare, a barrier was perceived in the application of theseinto practice. A lack of flexibility in being able to applythe guidelines were perceived by nurses who reported “Ithink we’ve got the resources to do a lot and…we followthe physical withdrawal of care sheet and …we shouldnot have it as a tick box but as a guide” (P5).Differing levels of support from leadership was also

perceived as a barrier to providing quality palliativecare. As a nurse stated, “I’ve had some great CN’s onwhen I’ve been facilitating and other ones that, youknow want the room cleaned and ready for anotherbaby” (P8). Further to this perceived difference insupport across leadership was the perception of diffi-culties in care continuity due to skill mix. This wasparticularly noted when nurses were allocated to sup-port families after their infant had died. One nursedescribed her discomfort during this process givenher minimal connection with the family during thepalliative care period “I might have felt a bit morecomfortable if I felt like I should been there morethan if I’d been somebody who had more connectionwith that family, yeah” (P3).The change from restorative to palliative model of

care was also perceived to be a barrier from somenurses. This shift in model of care was sometimesdifficult to navigate as it conflicted with the medicalideals of providing life-saving care. A nurse reportedthat “whereas when they’re in a palliative model…ina way totally opposite to what we normally do whichis very hard for a lot of them to get their headaround” (P8).

Regional location of the unitThe regional location of the unit was perceived topresent both facilitators and barriers for staff and fam-ilies. Half of the nurses reported that the regional loca-tion of the unit did not affect the quality of careprovided by staff. One nurse summed up this perceptionwhen stating “we’ve got the resources, we’ve got the abilityto access things. I think our staff is fantastic, I don’t thinkthere’s ever a staffing issue, I don’t think there’s a re-sources issue” (P5). However, this was not the perceptionof all the nurses. The following outlines facilitators andbarriers to providing quality palliative care for familiesand staff (See Fig. 3).

Facilitators of careNurses perceived that being a regional unit allowedthem to personalise care for families and be creative intheir care. As one nurse stated, “[being a regional unit]

provides us challenges for providing care. I don’t think itchanges it in a negative way. I think it requires us to bemore creative” (P2). These opportunities to be creativeand “personalise [palliative care] for those parents” facili-tated a more positive experience for families” (P8). Beinga smaller regional unit “provides us a lot of variety again,because we don’t see the same clientele all the time, itdoes help us to be more flexible about what the familymight need” (P2).

Cultural awareness and cultural support for staff andfamiliesWorking in a regional unit necessitated nurses to de-velop cultural awareness and culturally safe practiceswhen providing care to Aboriginal and Torres Strait Is-lander families. Nurses described their understanding ofcultural differences, stating “I think most of the Aborigi-nal people would prefer to have their babies with themand their families and they can’t always do that a lot…it’sjust that for the parents, I think that they would prob-ably feel more comfortable in their own environment”(P1). There was a reported awareness of the disruptionthis caused stating, “but if their babies are unwell they’reout of their own environment and culture, yeah culturalwishes” (P1). The regional location and concomitant cul-tural diversity of the unit also necessitated culturalknowledge and support from Indigenous support staff.Nurses reported that this was an important benefit tostaff and families, stating, “having families that come fromthat far [rural and remote areas] does create challenges forus and we are definitely lucky to have things such as theAboriginal Liaison Officer” (P2). Culturally safe practiceswere also important consideration, with a nurse notingthat “all the culturally different people that we’ve got hereso we’ve got to be culturally aware that some people dostuff different” (P7). In particular it was noted “the culturalaspects that sometimes it isn’t the parents that look afterthe baby, sometimes it’s a grandma” (P2).

Barriers to careFamilies – time pressures due to family locationTime pressure due to rural and remote locations of fam-ilies was the most mentioned barrier to supporting fam-ilies during palliative care. This was elegantly articulatedwhen a nurse noted “I think sometimes it’s difficult be-cause we are a regional, we’re a tertiary centre, a lot ofour mums and dads come from far away and they can’talways have their family members with them and they’reaway from home” (P1). Nurses were also required tonavigate the balance between the need to attend to thebaby’s medical needs and the needs for parents support.“I think if it’s a long term thing, we often encourageother family members to get here quicker” (P2). Difficul-ties in accommodating large extended families upon

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arrival to the unit were also described as a challenge.This flow-on effect was identified by a nurse who statedthat “being able to accommodate families from out oftown I think is a big thing” (P5).

Staff – availability of specialist teamsRegional location of the unit also limited the availabilityof specialist neonatal teams such as cardiac or paediatricpalliative teams. In the event of an infant’s treatmentchanging from critical care to palliative care, transferfrom regional to metropolitan treatment centres was re-ported to impact upon families. For example, “if it’s amatter of them having to fly somewhere to see that spe-cialist team and then still being given the bad news thatyou can’t do anything…being regional though regardless,you don’t have all the specialities, you don’t have all theoptions” (P6).

Staff – fewer palliative care experiencesHaving fewer palliative cases was identified as a chal-lenge for staff as there were reduced opportunities forstaff to develop experience and competence in deliveringcare. For example, a nurse reported that “it’s great youdon’t have as many for the end of life but it also meansstaff don’t have as much experience, you don’t have asmuch exposure to it so that you’re not as confident andcompetent as maybe someone that’d be in the city wherethere’s a lot higher numbers, purely by ratio” (P6).

Staff – engage with technologyWhile it was identified that the unit was resourced withtechnology devices such as iPads, there was a perceptionthat these were not used to their full potential to allevi-ate the impact of regional location upon families. It wassuggested that these devices could be used to connectimmediate and extended family who are separated fromtheir infants due to distance from home. As a nursestated “we’ve got these new iPads in the unit, why can’twe set up Skype for some of the families overseas andsay look grandma do you want to say goodbye whenyou’re in England” (P5).

Staff – increased need to support familiesRegional location of the unit also impacted upon thelevels of support for families required from staff mem-bers. Given the time it takes for family members to ar-rive at the unit from rural and remote areas, staffreported needing to increase their supportive role in theinterim. The impact upon staff members was describedby a nurse who stated that “sometimes perhaps it’s alittle more taxing on us as practitioners because maybewe do need to be a little bit more of a support group forsome families because a lot of our families do comefrom outlying regions” (P2).

Transfer to local hospital dilemma – a facilitator andbarrier to quality of palliative careThe practice of ‘backloading’ (transferring) infants tohospitals closer to their homes was reported as a

Regionality

Facilitators

Personal, Flexible, Creative Care

Cultural Awareness & Support for Family & Staff

Barriers

Family

Staff

No Availability of Specialist Teams

Fewer Palliative Care Cases

Engagement in Technology

Increased Need to Support Families

BackloadingBoth Facilitator &

Barrier

Fig. 3 Regional location of Unit – facilitators and barriers for providing palliative care

Kilcullen and Ireland BMC Palliative Care (2017) 16:32 Page 9 of 12

facilitator and a barrier to palliative care. This dilemmawas identified when a nurse stated,

[When we know that the baby is going to die] we liketo send them back to their family. But is that a goodthing? Knowing what those hospital’s resources areeven more stretched than our resources. So, are we,we are in a way doing family support, but [the localhospital] have an even lesser set up [for palliativecare]. I think that, than we do. That one’s [question], Idon’t think, we have sent them on further, we’ve sentthem back, and that’s a good thing and the parents doappreciate that, but then is that hospital set up to dealwith that [dying baby]? (P4)

DiscussionThe results of this study highlight the barriers and facili-tators of palliative care provision in a regional tertiaryneonatal unit. The focus on both the positive and nega-tive factors is a strength of the study that will allow adual approach to both addressing the barriers and facili-tating quality palliative care. Facilitators to care includedstaff factors of leadership, clinical knowledge and morals,values and beliefs, and family factors of emotional sup-port, communication and practices. However, identifiedbarriers were education, environment factors of lack ofprivacy and isolation, staff grief and loss, and systemicissues including policy and procedure factors. Barriers tocare are the most commonly researched [9–13]. Fewstudies have included both facilitators and barriers topalliative care provision [8, 12].Facilitators of good care identified in the current study

are reflected in previous research [8, 12]. Nurses in thisstudy identified the importance of clinical knowledge in-cluding palliative care education and the ability to adaptand tailor care to families in caring for neonates andfamilies. These nurses reinforced the need for good clin-ical guidelines, communication, and evaluation of thecare provided during palliative care. Establishingeffective clinical guidelines provided nurses with aframework within which to deliver care. Further com-munication included being an advocate for the infantwhile supporting families to make decisions [8], and pro-viding post-death information. Further, self-reflectionupon one’s morals, values and beliefs allowed nurses tosafely practise without becoming overwhelmed by thedifficulties of attending to dying neonates and their fam-ilies. However, staff opinions and beliefs have been previ-ously identified as a barrier to care [9]. For these nurses,perhaps developing self-reflection has the potential toencourage staff to engage in conversations about aspectsof care that are in conflict with their personal values,which may in turn help to alleviate moral distressidentified by other research [13].

Strong leadership was identified by nurses in thecurrent study as a facilitator of quality palliative care.This factor has not been explicitly identified in previousresearch. Strong leadership was evidenced by senior staffproviding mentorship to less experienced staff, and beingeffective communicators in the team. Leaders in the unitwere also perceived to be those nurses who were able tounderstand staff suitability for and experience of provid-ing care, and being able to balance the skill mix of nurs-ing staff. Previous research has identified inadequatestaffing and moral distress to be a barrier to palliativecare provision [11–13]. Supporting staff in the neonatalunit to enhance their leadership skills may help toaddress staffing difficulties.Barriers to palliative care provision identified in the

current study are similar to those in previous research.Attitudinal [11], educational [9, 12, 13], environmental[10–12] and institutional [9, 10] factors were identifiedby nurses in the current study. For example, these fac-tors included staff grief and loss, in-service provisiondifficulties, isolation of and lack of privacy for families,policy guidelines and procedural flexibility. It appearsthat these commonly identified factors negatively impactpalliative care provision in neonatal units in variouscountries. Further, these findings reinforce the needfor effective guidelines, staff and family support, edu-cation, and evaluation of the care provided duringpalliative care.As the only regional tertiary neonatal unit in Australia,

it was important to also explore the impact of regionallocation on palliative care provision. The impact of re-gional location has not yet been identified in previousresearch. Nurses identified barriers to care relating tofamily and staff factors. Nurses were acutely aware ofthe time pressures upon families to quickly travel longdistances at the end-of-life and the concomitant pres-sures upon staff to balance the needs of the family andthe neonate. Further, staff felt the pressures of providingsupport to extended family members who had travelledto the unit. These pressures may be ameliorated by theuse of technology to connect families during this time.For example, families could be connected to the unitusing telemedicine technology such as video-link andcameras in order to see their infant.Nurses also perceived that given the regional location of

the unit, exposure to fewer palliative cases impacted upontheir development of palliative care skills. Additionally,providing care to neonates without the immediate supportof specialist teams was also perceived as a barrier resultingfrom the regional location of the unit. While developmentof a paediatric palliative team was proposed, given the fewcases of palliative care in the regional unit, the operationof such a team was yet to be clearly defined. More creativeuse of technology to receive advice from subspecialists in

Kilcullen and Ireland BMC Palliative Care (2017) 16:32 Page 10 of 12

metropolitan cities might be considered within the unit toreduce the need for babies to travel, particularly when thelocal care givers recognise that continued care is futile.Given the regional location of the unit, returning neo-

nates to their local non-tertiary referring hospitals pre-sented a dilemma for staff. Nurses were aware that sendingneonates to the local hospital would ease access for familiesand extended families. However, nurses were also acutelyaware of the limited resources those hospitals have to pro-vide palliative care for the dying neonate. This delicatebalance was at the forefront of nurses minds when consid-ering whether or not to transfer the neonate. Communica-tion between the tertiary unit with the local hospitals abouttheir willingness to provide palliative care for individual ba-bies, facilitated by the use of telemedicine to introduce thedifferent staff teams to the family, as well as the use ofdocumented guidelines could facilitate timely transfer forsome babies and their families to a location closer to homeand community support.Facilitators of palliative care in the current study in-

cluded nurses’ perceptions of being able to provide per-sonal, flexible and creative care for families. Nurses wereable to surmount resource limitations that resulted frombeing geographically isolated from the nearest metropol-itan area. Importantly, given that over a third of neo-nates in the unit were Aboriginal or Torres StraitIslander neonates, nurses reported that their level of cul-tural awareness helped to pave the way for culturallyresponsive care in the unit. There is some data availableon the cultural aspects of care in the Australasian set-ting. Cultural specific practice explored in the NewZealand Maori population shows a desire of families andcommunities to be involved in palliative care planning,preferences for death to occur at home and the import-ance of prayer and song at the time of death [15]. Abori-ginal and Torres Strait Islander peoples of Australia alsohave culturally important beliefs around death whichneed to be respected in order to provide culturally safeand supportive [14]. Connection to community may leadto a desire for collective decision making with peopletravelling long distances before decisions surroundingpalliative care or withdrawal of care can be made.Many Aboriginal and Torres Strait Islander people

who live in small, very remote communities have strongcultural connectedness including cultural traditions andbeliefs. For these Aboriginal and Torres Strait Islanderfamilies, authority over the child may not reside with theparent, and discussions need to occur with the appropri-ate people present. Planning for events following deathmay need to include the practicalities of getting theinfants body back to the home area of the community –often a costly affair- and escorted by a person consideredappropriate within the community. Palliative care ser-vices themselves often have a low uptake by these

communities. Overall, the results of this study identifiedthe need for connection to the area in which the familylives, and the need for cultural sensitivity in theprovision of palliative care.The strength of this study was to explore both facilita-

tors and barriers to providing quality palliative care. Theregional nature of the unit also provides a strength inexploring the perceptions in a unit where the many ofthe extremely sick patients are far from their communitysupports. There is a large component of Aboriginal andTorres Strait Islander people served by the unit, soaspects of palliative care in a culturally diverse loca-tion are investigated. The sample size is small and al-though this is a potential limitation of the study, thisis consistent with qualitative methodology, with datasaturation obtained.

ConclusionsPrevious research has predominantly focused on the bar-riers to providing palliative care in the neonatal environ-ment. The strength of the current study is that itexplored both facilitators and barriers to providing qual-ity palliative care, and in doing so, makes an originalcontribution to the literature. Participants in this studyperceived several factors, such as education, to be both apotential barrier and facilitator. Identification is the firststep in a strength-based approach and implementationstrategies are required to address barriers and amplify fa-cilitating factors in order to provide quality palliativecare in the neonatal context. Further, specific facilitatorsand barriers to palliative care provision unique to re-gional neonatal units, not previously explored in the lit-erature, were identified. Study results have providedimportant considerations for regional and geographicallyisolated neonatal units, and will be used to inform clin-ical practice improvements, staff education support, andfurther research relating to palliative care provision forthe most vulnerable babies and their families.

AcknowledgementsThe authors acknowledge the valuable and generous contribution of theneonatal nurses who participated in the research.

FundingThere are no funding sources for this research.

Availability of data and materialsThe datasets used and analysed during the current study is available fromthe corresponding author on reasonable request.

Authors’ contributionsMK interviewed the participants, analysed and interpreted the data. MK andSI co-wrote the paper, read and approved the final manuscript.

Authors’ informationMK – MPsych(Clinical) PhD, James Cook University, AustraliaSI – MB ChB FRACP FRCPCH, Staff Specialist Neonatology, The TownsvilleHospital, Australia; PhD Candidate, James Cook University.

Kilcullen and Ireland BMC Palliative Care (2017) 16:32 Page 11 of 12

Competing interestsThe authors declare that they have no competing interests.

Consent for publicationNot applicable.

Ethics approval and consent to participateEthics approval was granted by The Townsville Hospital and Health ServiceHuman Research Ethics Committee, Townsville, Queensland (Approval HREC/13/QTHS/84) and James Cook University Human Research Ethics Committee,Townsville, Queensland (Approval H5349). Written informed consent wasobtained from all participants.

Publisher’s NoteSpringer Nature remains neutral with regard to jurisdictional claims in publishedmaps and institutional affiliations.

Author details1College of Healthcare Sciences, James Cook University, Townsville, QLD4811, Australia. 2Department of Neonatology, The Townsville Hospital,Townsville, QLD 4811, Australia. 3College of Medicine and Dentistry, JamesCook University, Townsville, QLD 4811, Australia.

Received: 28 November 2016 Accepted: 25 April 2017

References1. Costeloe K, et al. The EPICure study: outcomes to discharge from hospital

for infants born at the threshold of viability. Pediatrics. 2000;106(4):659–71.2. Keir A, McPhee A, Wilkinson D. Beyond the borderline: Outcomes for inborn

infants born at ≤ 500 grams. J Paediatr Child Health. J Paediatr Child Health.2014;50(2):146–52.

3. Singh J, Lantos J, Meadow W. End-of-life after birth: Death and dying in aneonatal intensive care unit. Pediatrics. 2004;114:162–1626.

4. Walther FJ. Withholding treatment, withdrawing treatment, and palliativecare in the neonatal intensive care unit. Early Hum Dev. 2005;81:965–72.

5. Wilkinson D. The window of opportunity: decision theory and the timing ofprognostic tests for newborn infants. Bioethics. 2009;23(9):503–14.

6. Australian Commission on Safety and Quality in Health Care. NationalConsensus Statement: essential elements for safe and high-quality end-of-life care. Sydney: ACSQHC; 2015.

7. Uthaya S, et al. Managing palliation in the neonatal unit. Arch Dis ChildFetal Neonatal Ed. 2014;99(5):F349–52.

8. Epstein EG. Moral obligations of nurses and physicians in neonatal end-of-life care. Nurs Ethics. 2010;17:577–89.

9. Chen CH, et al. To Explore the Neonatal Nurses’ Beliefs and Attitudes towardsCaring for Dying Neonates in Taiwan. Matern Child Health J. 2012;1–9.

10. Kain V. Palliative care delivery in the NICU: What barriers do neonatal nursesface? Neonatal Netw. 2006;25(5):387–295.

11. Kain V. Exploring the Barriers to Palliative Care Practice in Neonatal Nursing:A Focus Group Study. Neonatal Paediatr Child Health Nurs. 2011;14:9.

12. Kain V, Gardner G, Yates P. Neonatal palliative care attitude scale:development of an instrument to measure the barriers to and facilitators ofpalliative care in neonatal nursing. Pediatrics. 2009;123(2):e207–13.

13. Mendel, T.R. The use of neonatal palliative care: Reducing moral distress inNICU nurses. Journal of Neonatal Nursing, 2014. 20, 290-293 doi: http://dx.doi.org/10.1016/j.jnn.2014.03.004.

14. Maddocks I, Raynor RG. Issues in palliative care for Indigenous communities.MJA: Palliative Care. 2003;179:S17–9.

15. Oetzel J, et al. Managing Communication Tensions and Challenges duringthe End-of-Life Journey: Perspectives of Māori Kaumātua and Their Whānau.Health Commun. 2014;30(4):350–60.

16. Smith J, Flowers AP, Larkin M. Interpretive Phenomenological Analysis:theory, method and research. London: Sage Publications Ltd; 2009.

17. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol.2006;3(2):77–101.

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