parental involvement in neonatal comfort care

JOGNN R E S E A R C H

Parental Involvement in NeonatalComfort CareCaryl Skene, Linda Franck, Penny Curtis, and Kate Gerrish

CorrespondenceCaryl Skene, DMedSci,Jessop Wing Neonatal Unit,Tree Root Walk, SheffieldTeaching Hospitals NHSTrust, Sheffield, UK [email protected]

Keywordsparentspaincomfort careethnographyneonatal intensive care unit

ABSTRACT

Objective: To explore how parents interact with their infants and with nurses regarding the provision of comfort care in

a Neonatal Intensive Care Unit (NICU).

Design: Focused ethnography.

Setting: A regional NICU in the United Kingdom.

Participants: Eleven families (10 mothers, 8 fathers) with infants residing in the NICU participated in the study.

Methods: Parents were observed during a caregiving interaction with their infants and then interviewed on up to four

occasions. Twenty-five periods of observation and 24 semistructured interviews were conducted between January and

November 2008.

Results: Five stages of learning to parent in the NICU were identified. Although the length and duration of each stage

differed for individual parents, movement along the learning trajectory was facilitated when parents were involved in

comforting their infants. Transfer of responsibility from nurse to parents for specific aspects of care was also aided by

parental involvement in pain care. Nurses’ encouragement of parental involvement in comfort care facilitated parental

proximity, parent/infant reciprocity, and parental sense of responsibility.

Conclusion: Findings suggest that parental involvement in comfort care can aid the process of learning to parent,

which is difficult in the NICU. Parental involvement in infant comfort care may also facilitate the transfer of responsibility

from nurse to parent and may facilitate antecedents to parent/infant attachment.

JOGNN, 00, 1-12; 2012. DOI: 10.1111/j.1552-6909.2012.01393.x

Accepted April 2012

Caryl Skene, RN, RM,DMedSci, is a neonatalnurse consultant in theJessop Wing Neonatal Unit,Sheffield TeachingHospitals NHS FoundationTrust, Sheffield, UK.

(Continued)

I nfants in the Neonatal Intensive Care Unit(NICU) may require frequent painful interven-

tions and are unable to express their discomfort inways that can be understood by their caregivers.As the safest and most effective ways to preventpain in the neonate are not fully understood, theproblem is further exacerbated by difficulties infinding a balance between effective pain relief andavoidance of serious adverse effects from painmedication (Anand, 2007). Despite significant ad-vances in other aspects of neonatal care, the man-agement of pain in the NICU remains an immensechallenge for caregivers.

Parents are an often overlooked source of comfortto infants in the NICU. They may have a uniquecontribution to make to infant pain managementby identifying pain cues and providing effectivenonpharmacological interventions. Unfortunately,research generally describes how parents are ex-cluded from pain management rather than high-lighting the contribution they can make. Parents

have reported concerns over their infants’ discom-fort, their inability to respond, and the negativeeffect this might have on their ability to parenttheir infants in the NICU (Franck & Callery, 2004;Gale, Franck, & Kools, 2003). As parental infantinteraction not only meets an immediate mater-nal need, but also plays a crucial role in develop-ing a secure parent/infant attachment (Fenwick,Barclay, & Schmied, 2001, 2008), these are justifi-able anxieties.

Further insight into the importance and the dif-ficulties of parental involvement in the NICU isidentified in the literature on parent/infant attach-ment. Goulet, Bell, and Tribble (1998) identifiedthree specific antecedents to attachment: proxim-ity, reciprocity, and responsibility. All are essentialfor parent/infant attachment yet difficult to achievein the NICU. To establish and maintain proxim-ity, that is also necessary when providing comfort,a parent uses behaviors such as touch or visualcontact, whereas the infants use crying, smiling,

Disclosure: The authors re-port no conflict of interestor relevant financial rela-tionships.

http://jognn.awhonn.org C© 2012 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses 1

R E S E A R C H Parental Involvement in Neonatal Comfort Care

Specific involvement in providing comfort can aid the processof learning to parent in the neonatal intensive care unit.

grasping, or reaching out to express their needs.In the NICU, however, the high technology en-vironment, routine clinical practices, and the at-tributes of the sick infant often interfere with effortsto establish and maintain close proximity (Engleret al., 2002). Reciprocity is an adaptive processthat leads to a series of mutually satisfying be-haviors; based on the infant’s behavioral signalsand the parent’s response such as smiling, vocal-izing, touching, and kissing (Goulet et al., 1998).This may be difficult because sick or preterm in-fants may not demonstrate the same behaviors ashealthier infants, and parents find it difficult to readtheir infants’ cues (Goldberg & Divitto, 1995). Thedevelopment of responsibility involves promotingsafety and comfort, and it supports the establish-ment of parental identity. This is particularly prob-lematic if parents perceive nursing and medicalstaff to be the infants’ main caregivers and theapparent expertise of staff makes them feel su-perfluous or unwanted in the care of their infants(Fenwick et al., 2001; Reis, Rempel, & Scott, 2010;Wigert, Johansson, & Berg, 2006).

Linda Franck, PhD, RN,RSCN, FAAN, is professorand chair in the Departmentof Family Health CareNursing, University ofCalifornia, San Francisco,CA.

Penny Curtis, PhD, RN,RM, is a reader in Childand Family Health andWellbeing and director ofresearch at the School ofNursing and Midwifery,Sheffield University,Sheffield, UK.

Kate Gerrish, PhD, RN,RM, is research professorin the Centre of Health andSocial Care Research,Sheffield HallamUniversity, Sheffield, UK.

Thus, the literature suggests that parental involve-ment in neonatal care, and in particular paincare, has short- and long-term benefits for par-ent and infant. Although there is no evidence thatwhen parents do become involved it is benefi-cial for their infants, it is reasonable to assumethat this may be the case. This assumption issupported by a number of concepts used to in-form the delivery of neonatal care. Firstly, the con-cept of family-centered care that recognizes thatparticipation reduces parental stress and anxiety(Eichner & Johnson, 2003). Second, the notion ofdevelopmental care that suggests that one wayto offset some of the disadvantages of prematurebirth is to increase family involvement (Kenner &McGrath, 2004). Third, attachment theory sug-gests that early and appropriate parent/infant in-teraction affects the subsequent development ofsecure relationships (Ainsworth, 1989).

The initial aim of this study was to explore is-sues around parental involvement in neonatal painmanagement. However, as this is not yet com-mon practice in most neonatal units, it was diffi-cult to identify an appropriate sample group. Thefocus was therefore widened to include any situa-tion that might cause discomfort, such as general

handling, monitoring, nursing procedures, and,in some instances, feeding. We explored the re-search question: How do parents interact withinfants and nurses regarding the provision of com-fort care in a NICU where parents have beengiven specific information and support to providecomfort?

MethodsDesignThe method chosen for the study was focusedethnography, an approach that Savage (2000)described as “a complex and contested activ-ity drawing on a range of epistemological po-sitions and methods and often demanding dif-ferent modes of evaluation from other methodsmore commonly used in healthcare research”(p. 1402). This approach to the study meant thatit was possible to study the experiences of par-ents in the neonatal unit as a group with commonexperiences while acknowledging that each per-son would have a different perception of realityaccording to his or her individual circumstancesand previous experience.

Ethnography is described as a means of gain-ing understanding about a culture or subcul-ture by getting to know the research partici-pants and becoming immersed within their culture(Hammersley & Atkinson, 2007). Rather than look-ing for the unusual, ethnographers concentrate onroutine daily lives. Participants are encouraged todescribe their culture to enable the researcherbuild up an overall picture of its language, rit-uals, and relationships. A focused ethnographyprovides the opportunity to study specific issueswithin a single culture or social situation amonga limited number of people within a specified pe-riod of time (Knoblauch, 2005). Through focus-ing on a specific research question (in this caseparental involvement in comfort care) the specificelements of knowledge relevant to understand-ing the practices involved are highlighted. Dataare collected through one or more episodes ofobservation then combined with unstructured orsemistructured interviews, the goal being to ac-quire the background knowledge necessary toperform the activities in question.

Ethical ConsiderationsThe study was approved by a National HealthService research ethics committee and by med-ical and nursing managers in the participatingunit. An awareness of the potential difficultiesfor a researcher exploring his or her own work

2 JOGNN, 00, 1-12; 2012. DOI: 10.1111/j.1552-6909.2012.01393.x http://jognn.awhonn.org

Skene, C., Franck, L., Curtis, P., and Gerrish, K. R E S E A R C H

environment led to a separate article discussingethical dilemmas related to the researcher practi-tioner role (Skene, 2009). Comprehensive partici-pant information leaflets were produced and dis-cussed with potential participants to ensure thatthey did not feel coerced into participation. For theone mother who did not speak English, the con-tent of the booklet was discussed, using the ser-vices of an interpreter authorized by the hospital.Parents were asked to give written consent for in-volvement, and each was assigned a pseudonymto protect his or her anonymity. They were also as-sured of their right to opt out of the study at anytime. Nurses were asked to give verbal consentfor inclusion if they were likely to be involved in thecare of an infant being observed and assured thatthey could opt out of the study at any time. Noneof the staff chose to opt out; and as they were notinvolved in interviews and not identifiable duringobservation, they were not assigned pseudonyms.

SettingThe study took place between January andNovember 2008 in a regional NICU in the UnitedKingdom. The main researcher’s role as nurseconsultant in the unit meant that she was famil-iar with the setting for the study but not directlyinvolved in caring for the infants or managing thestaff involved. The unit provided care primarily forinfants born in the local area, but infants fromother units in the United Kingdom were also ad-mitted, and therefore some parents travelled longdistances to see their infants each day. Adjacentto the neonatal unit, there were six family roomswhere parents could stay overnight. These roomswere usually allocated to parents according to theseverity of their infants’ illnesses. The neonatal unithad 10 clinical rooms accommodating up to 12 in-tensive care, 8 high dependency, 18 special care,and 6 transitional care cots.

Prior to the commencement of the study, the pro-tocol and the booklet for parents were discussedat staff meetings. As part of continuing educa-tion and an ongoing strategy to improve infantpain management, nurses, physicians, and alliedhealth professionals already received teaching re-garding pain management and the role of the par-ent in providing comfort. This meant that most ofthe clinical staff actively encouraged parents tobecome involved in their infants’ care.

Sample SelectionAll parents older than age 16 years and consid-ered by the nurse in charge as suitable for in-

clusion were approached by the researcher andgiven verbal and written study information. The ini-tial aim of the study was to interview all parents asa couple within the first week of admission andthen again every 2 weeks until discharge. How-ever, some parents chose to join the study afterthe first week, some infants were so critically illthat the nurse coordinator considered it insensi-tive to approach the parents regarding the study,and some infants were transferred to other units.Parents were recruited between the 5th and 31st

day after their infants’ birth (Table 2) and were ob-served on one to four occasions. Written informedconsent was obtained from all participants, and forone mother, who did not speak English, informa-tion and consent was discussed via an interpreter.

Study ProceduresParents who consented to participate in the studyreceived two information booklets. The first, Lookat Me I’m Talking to You, produced by the preterminfants charity BLISS (2005), provided informationto help them understand their preterm infant’s be-havior and suggested ways they might respond.The second, Comforting Your Baby in IntensiveCare (Franck, 2008), included specific informa-tion about pain and comfort care managementin the NICU. Approximately 2 days after receiv-ing the booklets, the researcher arranged to meetwith the parents to observe and then discuss theprovision of comfort care. Observation involvedone or both parents and lasted from 30 to 60 min-utes, during which time the researcher positionedherself at the side of the incubator. The researcherattempted not to interfere with parent/infant inter-action but answered questions and on some oc-casions was required to provide practical supportsuch as helping to change bedding or attendingto an alarm.

Within 5 to 30 minutes of the conclusion of eachobservation, a discussion with the parents regard-ing their involvement in providing comfort tookplace. These sessions also lasted between 30and 60 minutes. During observation, general noteswere made in a notebook and specific notes, re-lating to each area of interest were documentedin a standard format (Table 1). As the study pro-gressed, new themes were identified and subse-quent sessions were used to explore emergingthemes and test out tentative assumptions. Inter-views, using a question guide, were recorded ona small digital recorder and transcribed verbatimby the researcher.

JOGNN 2012; Vol. 00, Issue 00 3


Table 1: Observation and Interview Ques-tions

Initial Areas for Observation Initial Interview Questions

• Is parent able to identify

infant’s pain or discomfort?

• Did the comfort care

information help you to

recognize when your

baby was

uncomfortable?

• Does the parent initiate

comfort measures?

• What did you do if you

felt the baby was

uncomfortable?

• Can parent see response to

their comfort care?

• What happened when

you tried to comfort

your baby?

• Do parents contribute to

decisions about the

infant’s care?

• Do you feel that you were

involved in decisions

about your baby’s

care?

• How long do parents spend

in close proximity to the

infant?

• Did you have the

opportunity to

experience physical

contact with your

baby?

Data AnalysisFollowing the principles of ethnographic dataanalysis (Hammersely & Atkinson, 2007), the firststage of analysis involved immersion in the data toobtain an initial understanding of the key ideas andrecurrent themes (Holloway & Wheeler, 2002). Thisstarted within a few days of data collection and in-volved listening to interviews, reading transcripts,studying field and observational notes, and jot-ting down initial impressions. As potential themesemerged, they were checked against existing datathat might refute or confirm their significance. Thesecond stage of analysis involved rereading thedata and using charts to begin to organize dataaccording to tentative themes. This allowed indi-vidual pieces of data to be lifted from their originalcontext and rearranged to build, compare, andcontrast the themes (Holloway & Wheeler). Eachtranscript was then revisited and coded accordingto the main themes.

When data had been collected from seven familiesover a period 6 months, there was a break of datacollection for one month. The main themes werethen reviewed, and the data examined for con-flicting evidence for negative case analysis (Ely,1991), resulting in the identification of a number

of main assertions. When data collection resumedwith four more families, issues highlighted from thepreliminary analysis were probed further using ex-panded descriptive questions. For example, initialdata highlighted comfort care provided by nurseand thus reasons why a nurse rather than a parentmight provide care were explored during later in-terviews. This identified that parents used this timeto observe and learn from their infants, leading tothe final theme parent observes infant. The firstauthor was responsible for all of the data collec-tion, and the interview transcripts and field noteswere shared with all of the coauthors. Interpreta-tion of the data was an iterative process among theteam with disagreements resolved through furtherexamination of the raw data and discussion.

Ensuring TrustworthinessAccording to Holloway and Wheeler (2002), thetrustworthiness of a qualitative study is the ex-tent to which the data provides insight, knowl-edge, and understanding of the meanings, at-tributes, and characteristics of the group beingstudied. Therefore, meticulous documentation offield notes and constant reflexivity during and fol-lowing each episode of data collection were con-tinued throughout the study. The use of more thanone method of data collection and the interpre-tation of observation and interview data togetherwere further means of ensuring the credibility. Ten-tative analyses and emerging themes were fedback to participants in subsequent interviews forclarification or elaboration.

FindingsTwo mothers and one father participated in thestudy without their partners. Eight mother and fa-ther couples participated together. Overall, thefamilies of 11 infants from various social eth-nic and educational backgrounds were involved(Table 2). Three other mothers were given infor-mation but declined to be involved giving no rea-son for their decision. The gestation of the infantsranged from 23 to 32 weeks, and their weightranged from 520 grams to 1615 grams. Findingsare presented according to the two main themesrevealed by the analysis with example quotes fromparticipants. The first theme describes how par-ents learned to comfort and to parent their infantsin the NICU. The second theme describes hownurses transferred responsibility for specific as-pects of care to the parent and how these interac-tions influenced the process of learning to parent.



Learning How to Comfort andLearning How to ParentIn the first days after admission to the NICU, par-ents were often afraid to touch their infants for fearof causing harm or discomfort. By the time of dis-charge however, most were confident in their abil-ity to comfort their infants. This process of learn-ing to comfort was closely linked to the process oflearning to parent.

Parent Afraid to Touch Infant (“PetrifiedEven to Touch”)Many of the parents described feelings of shockand anxiety around the time of their infants’ ad-mission to the neonatal unit. Although nurses triedto encourage them to touch their infants, they of-ten decided not to do so, describing how theyfelt scared or even petrified. Parents described anumber of situations in which they felt afraid andthis was often related to a concern that they mightharm their infants:

I was petrified to even touch him. They sayit is fine to open the door, to look in and putyour hand on him and stuff but obviously wedon’t want to pass germs on or touch himand make him scared or catch any of thewires.

A major preoccupation for many parents was themedical equipment, and by focusing on the moni-tors, parents looked for information about their in-fants that might alert them to a problem or providereassurance. Parents did not express an aware-

Involvement in comfort care highlights a parent’s uniqueknowledge and skill in relation to his or her own infant.

ness of pain or discomfort in the first few days,and written information was often put to one sideuntil later. David said that discomfort is “not some-thing you think about,” and Martin said that hisdaughter “never seemed to be in pain.” Mary saidit was more important to “know the truth” about herinfant, suggesting a hierarchy of needs in whichissues of survival must be addressed before painand comfort.

Parent Observes Infant (“You Can JustSee from Looking at Her”)After the first few days in the neonatal unit, almostall parents began to focus more on their infantsand less on the equipment. Many parents stoodor sat alone at the cot side for long periods of timewith their gaze firmly fixed on their child. Duringthese long periods of gazing, parents often be-came able to identify behaviors suggesting com-fort or discomfort:

At first I didn’t consider pain, now when hisarms and legs are going, he might be inpain. Personally, I like to see him still. Yes-terday he was frowning and I said, “Whatare you frowning at?” He opened his eyesand I thought he was saying, “You couldn’tleave me now,” and I thought, “Ok I’ll stay.”

Table 2: Participants

Parents Ethnicity Infant Gestation at Birth Age Recruited Number of Number ofBirth (weeks) Weight (kgs) (days) Observations Interviews

Brenda Darren White British Amy 28–30 1–1.5 31 1 1

Kay Jon White British Bea 28–30 1–1.5 5 4 4

Lesley Neil White British Caitlin <27 <1.0 31 3 3

Sarah Mark White British Daniel >31 1–1.5 14 1 1

Nadifa Korfa Somali Eshe <27 <1.0 19 3 2

Fahima Pakistani Fahim <27 <1.0 13 1 1

Sahar Iraqi Ahmed >31 >1.5 12 1 1

Sally Gary White British Harry <27 <1.0 7 4 4

Carol David White British Iain <27 <1.0 5 3 2

Martin White British Jessica 28–30 1–1.5 6 1 1

Mary Liam White British Karl <27 <1.0 10 3 3



Mark said he was “learning to understand” hisson’s body language and recognized discomfortby changing facial expressions. Lesley said shecould “tell just by looking” if her daughter was un-comfortable. The long periods of time spent gaz-ing at the bedside involved active learning ratherthan passive inactivity. This was particularly appar-ent when parents discussed the meaning of theirinfants’ actions together. Comments such as “lookshe’s moving her arm,” “I think she is just gettingcomfortable there,” or “I don’t think she liked that”suggested that parents were getting to know theirinfants and building up an understanding of theirindividual behaviors.

When asked about the value of the written infor-mation they received in the first few days, mostparents said they “put the booklet to one side”or “glanced through it.” They perceived the infor-mation to be more valuable after long periods ofobserving their infants. Some said that the writteninformation confirmed what they had already ob-served for themselves. Others parents said thatthey offered an interpretation of their infants’ be-havior that helped them to understand what theyhad seen. Overall, the written information helpedparents to understand their infants’ behavior onlyin conjunction with information from their own ob-servation.

Parent Initiates Physical Contact (“WeHave to Touch Him . . . It Makes HimFeel Better”)Within the first few days of admission, parentswere usually encouraged by the nurses to put ahand inside the incubator and touch their infants,particularly when the infant appeared unsettled.This was clearly difficult for some parents, butonce they were able to touch their infants theyfelt less fearful. Carol on Day 5 said, “At first thethought of just touching him made me scared anduneasy, but we are his parents and we have totouch him. It makes him feel better.”

Parents described “putting a hand in the incuba-tor” or “placing a hand on the infant” to settle them,and Sarah felt that “just touching or talking” toher infant made him feel comforted. Parents de-scribed how, as they learned to comfort their in-fants, they also learned how to respond to theirbehavior. When asked how they knew if their in-fants were uncomfortable, all parents were ableto identify at least one behavioral indicator suchas a facial expression or an activity. They werealso able to describe comfort care measures they

used to respond to their infants’ discomfort, suchas gentle touch or a quiet voice. Furthermore, mostparents noticed a positive response from their in-fants when they used comfort measures.

Parent Participates in Care Giving (“TheFirst Time I Changed Her Nappy”)Most nurses encouraged parents to gradually be-come involved in providing care to their infants,and this sometimes involved helping to change adiaper (nappy) or helping to change a sheet soonafter admission to the NICU. For the majority ofparents, it was not until they had begun to learnabout their infants through observation and phys-ical contact that they became increasingly con-fident and involved in caregiving. Parents oftenrelied on the nurses to support and guide themduring this stage, and individual parents requireddifferent levels of support. Some parents remainedafraid that they might harm their infants but trustedthe nurses to provide adequate support:

When she was first in there, I was a bit un-sure about touching her, I didn’t know whatI could touch and what I couldn’t with an in-fant so tiny, but now we just take to it straightaway, if she’s a bit upset or if she doesn’tlook too comfy.

For some, the moment of first feeling like a par-ent was linked to an episode of physical contact.This often happened during care times and wasinitiated as a form of comfort:

Although I knew he was mine I didn’t feel likehe was mine but the last few days, sincechanging his nappy and since he’s beengetting my milk, that’s really good and heseems to be doing really well.

Parent Becomes Confident in Caregiving(“That’s My Job”)As parents became confident in comforting theirinfants, a distinction between nursing and parentalresponsibility for different aspects of care devel-oped. Initially, parents talked about helping thenurse to change a diaper or to change bed-ding. Mary said that she would help if the nursesasked her, but she preferred to observe. Sallysaid that she would support her infant if thenurses needed her to. As parents gained moreconfidence, however, they began to talk aboutthe nurse helping them, using phrases such as“the nurse will change the nappy for me” or “thenurse will take care of her for me.” The distinction



between nurses’ and parents’ jobs was expressedby nurses and parents. Sally expressed this bysaying “Their job is to look after him and makehim better, see that he is stable, not to change hisnappy. That is mine or his dad’s job to do.”

Alongside growing confidence in their ability toprovide care, parents developed confidence intheir knowledge of their own infants. They oftenknew how their infants might respond to a partic-ular situation or intervention and used this knowl-edge to inform their caregiving. Mark knew thathis son Daniel settled best when having his earstroked; Martin said his daughter was only com-fortable when she could move her legs onto hernest of bedding. Furthermore, a parent’s decisionto stay at the bedside during a potentially un-comfortable event was usually linked to his or herlevel of involvement. Most were initially reluctantto watch procedures but were willing to stay atthe bedside if they perceived their presence to bebeneficial to their infants:

I stay to comfort her. I like comforting herbecause I know what she’s been through.It’s not like I want to see what’s happening,but be there for her. I just sit, I don’t getinvolved but I’ll comfort her and hold herhand and stuff.

Transferring ResponsibilityInitially, nurses assumed responsibility for care-giving while parents took a more passive role,then parents and nurses gradually began to pro-vide care together. As the parents’ confidenceincreased, the nurse handed over responsibilityfor specific activities and adopted a more pas-sive role. This process of handing over respon-sibility appeared to be facilitated when parentswere involved in their infants’ pain and comfortcare. In most situations, the nurse gradually en-couraged the parents to become more active inproviding comfort to their infants. As the balanceof responsibility gradually changed, parents be-came more confident in providing and sometimesinitiating comfort care.

This transfer of responsibility did not occur in thesame way for all parents and was not always linkedto the ability of the parent. In one scenario, a nursetook a very active role despite parental confidenceand ability to provide care. In another, the nurseencouraged a father to provide care for his verysick infant even though he had no experience indoing so and was not confident in his ability.

Comfort Provided by NurseIn the first few days, the parent/nurse relationshipwas one in which the nurses provided informationto the parent and physical care for their infantswhile the parent listened or observed. Parents ac-cepted this situation and described the nurses as“fantastic,” “helpful,” and “in control.” They trustedthat the nurse would provide excellent care fortheir infants and expressed absolute confidencein the nursing staff, “I have all my trust in them. Ifthe outcome is the worst I’m not expecting them towork miracles. I know that whatever they do, theydo it for him; they do their best.”

This situation was beneficial to parents and nursesas it enabled the nurse to provide care for theinfant while the parent observed and learned.Although this appeared to be a relatively pas-sive stage for parents, it was one in which theycould learn about their infants and prepare for ac-tive involvement. The opportunity to stand backand watch was particularly important for parentswhose only means of gaining information was toobserve the nurse. Nadifa, via an interpreter said,“I saw people doing things and watched them. Idon’t read but I watch so I’ve learned from watch-ing, they have been very helpful.”

Most parents appreciated nurses providing carefor their infants in the first few days. Once theylearned how to provide care and to comfort theirinfants, however, they resented the nurse doingwhat they considered to be their job:

The nurse last night asked me, “Can youchange her nappy or do you want me to doit?” and I thought, I’m her bloody mother,of course I know how to change a nappy.Feeding is one thing because she is gettingtube fed, but nappy changing, and cleaningand washing her down and stuff, that is myjob.

There were some occasions when parents con-sidered it appropriate for a nurse to comfort theirinfants, for example, if they were not present, theinfant was very sick, or if they chose to observe. Atother times however, if a nurse provided comfortcare, despite the presence of the parent, it wasconsidered inappropriate and a potential sourceof conflict.

Comfort Provided by Nurse and ParentAs parents gradually became more involved incaregiving, they worked together with nurses, and



this increased their confidence to comfort their in-fants. They recognized that joint caregiving timeswere beneficial for themselves and their infantsbecause it enabled comfort to be provided waysthat might not have been otherwise possible. Forexample, parents often held or talked to their in-fants while the nurse carried out care or vice versa.Care times often ended with the nurse handing theinfant to the parent for skin to skin contact:

The nurse lifted Fahim up, supporting allof his tubes. Fahima changed the sheetsand changed his position. At the end of thecare time, the nurse pulled out the incubatortray so that it was easier for Fahima to see,touch, and comfort Fahim.

As a parents’ confidence increased, nurses grad-ually handed over responsibility, and parentscould then develop their practical skills in a safeand supportive environment. Mary said that al-though the nurse sometimes stepped back, shewas always near enough for her to call. Other par-ents described how nurses left them to comforttheir infants but constantly observed the monitorsand responded immediately if necessary:

You know they’re there if you need them,they can be filling charts but glancing tosee how she’s doing. You don’t feel they’rehovering over you and watching your everymove. They step back but not so far thatyou’d think what if something went wrong.

Generally, nurses were able to assess parental ex-perience and provide an appropriate level of sup-port. Parents were then able to comfort their in-fants and their confidence increased. There wereoccasions, however, when the nurse did not take aparent’s individual experience or confidence intoconsideration when planning a care time. Some-times this was due to the nurse’s workload, but Kaysaid that it was sometimes “hit and miss” whetherthe nurse caring for her infant each day would in-clude her in providing care and comfort for herinfant.

Comfort Provided by ParentOnce parents were confident in comforting theirinfants, the nurse generally remained in the back-ground, observing from a distance. This meantthat the parent was able to enjoy some privacywith his or her infant while knowing a nurse wasnearby. It seemed to be accepted by nurses and

parents that they each had separate roles in rela-tion to the infant’s care:

It’s my job to make sure she’s comfortableso after they’ve done what they need to,if I don’t think she’s comfortable, I’ll calmher, turn her, give her a dummy (pacifier)and stroke her face until she’s settled. I’llstay there until she’s not moving aroundtoo much. Their job’s not personal to her,because they do it with other babies, butmine’s personal.

Once parents became confident in providing com-fort, they continued to do so even if the infantsbecame acutely unwell. On some occasions, theparent and nurse shared caregiving and workedtogether on tasks such as changing a diaper,changing bedding, or repositioning. However, itwas never necessary for a parent to relinquish allresponsibility for providing comfort. The responsi-bility for specific aspects of care such as mouthcare, diaper changing, and settling following afeed clearly remained with the parent even if heor she needed temporary support from the nurse.

Initially information was passed from the nurse tothe parent, but as parents learned more they be-gan to share what they knew about their infantswith the nurse. This often had a direct impact onthe infants’ care. Kay described how, recognizingher daughter was uncomfortable, she discussedthis with the nurse and this resulted in a joint deci-sion to increase the duration between care times.Sarah was able to inform her son’s nurse how of-ten he required a specific interventions and howhe usually responded to it:

The nurse asked if Daniel normally neededsuction and Sarah replied “Yes usually ev-ery hour.” She said “Well he sounds a bitgurgly now” and used a suction to clearhis nose and mouth. Daniel wriggled aroundand his parents smiled. Sarah said “He usu-ally gurgles and blows some of it out.” Thenurse said “that’s OK then.”

A parent’s unique knowledge of his or her infantwas apparent not only during care times but also inmedical ward rounds when parents were asked toshare their knowledge and contribute to care plan-ning. During one ward round, a physician askedKay if her daughter seemed comfortable since dis-continuing her morphine infusion. Kay said shewas surprisingly settled, and this informed a dis-cussion about her ongoing management.



Although by the time of discharge, nurses neededto relinquish caregiving responsibility, this processoccurred at different times and at a different pacefor each family. Parents varied in their degree ofconfidence and experience in comforting their in-fants. Nurses also varied in their willingness to al-low parents to take responsibility. Care times inwhich the parent was responsible for caregiving,however, occurred earlier for those who spent longperiods of time in the nursery. Kay, for example,roomed in and was present at the bedside for mostof the care times. This meant that she learnedto provide comfort care confidently and that thenurses were aware of her ability to do so:

She said that the nurses let her get on withthings because they knew what she coulddo and she would ask if unsure. Kay washappy with that, as was now much moreconfident. After the care, Kay sat next to theincubator and the nurse lifted Bea out ontoKay’s chest for skin-to-skin contact. Thenurse left them alone behind the screensbut was able to observe the monitors.

Generally when parents provided comfort, therewere three distinct benefits for the infant. Unlikenurses, who were frequently interrupted, parentswere able to focus solely on their infants and ac-curately interpret their behavioral cues. Parentswere also able to stay at the bedside to settletheir infants following a procedure or intervention.Furthermore, some comfort interventions such askangaroo care could only be provided by a parent.

DiscussionA graphical summary of the findings is presentedin Figure 1, which demonstrates the five-stage tra-jectory of learning to parent and the three stagesof handing over responsibility from nurse to par-ent that were observed in this study and facilitatedby parental involvement in comfort caregiving. Italso illustrates how the main themes of learning toparent, transfer of responsibility, and antecedentsto attachment may facilitate precursors toattachment.

Learning to ParentThe findings highlight a similar process of learningto parent as those described in other studies andoutlined in a meta-analysis (Aagaard & Hall, 2008).They also demonstrate how each stage servesa particular purpose, and parental involvementin comfort care can facilitate movement alongthe trajectory. Furthermore, although parents were

given written information about pain and comfort,they learned predominantly from observing theirinfants. This enabled them to understand their in-fants’ normal behavior patterns, recognize behav-iors that might indicate comfort or discomfort, andidentify responses to specific comfort measures.In other words, they learned through observationand interaction. The ability to learn from their in-fants continued throughout the trajectory of learn-ing to parent.

Our findings extend previous research by sug-gesting the need to find alternative ways of con-ceptualizing the parent/nurse/infant triad in whichthe nurses are the expert teacher and the parenta passive recipient of their knowledge. In relationto comfort care, it may be more helpful to view theinfant as the teacher and the parent, who learnsdirectly from forming a relationship with his or herinfant, as a developing expert in certain aspectsof infant caregiving (e.g., comforting). The nurse’srole is then to facilitate the parent/infant relation-ship and provide information, emotional, and in-strumental support. Such a shift in emphasis doesnot disregard the nurse’s professional knowledgeand skill but rather acknowledges that thougha nurse may possess expertise relating to gen-eral neonatal behavior, parents may develop theirown expertise relating to their individual infant’sbehavior.

In learning to become involved with their infants,parents faced a number of barriers to spendingtime at the cot side, as previously highlighted in theliterature. For example, an abundance of technicalequipment cramped around the bedside and lim-ited space next to the infant (Wigert et al., 2006).Furthermore, lack of accommodation, the expenseof travelling, and the length of ward rounds limit theamount of time parents can spend at the bedside(Greisen et al., 2009).

The benefits of parental time at the bedside havealready been demonstrated by Ortenstrand et al.(2010) who found that providing facilities for par-ents to stay in the NICU from admission to dis-charge reduced the overall length of stay. Thefindings from this study suggest that parents’ in-volvement in comfort care reinforce their need tobe close to their infants. The importance of facil-itating parental presence should therefore be ac-knowledged in the education of neonatal healthcare professionals. The need for parental accom-modation and space at the cot side should alsobe a major consideration in future standards forNICU design. Furthermore, individual ward routine



Figure 1. Impact of parental involvement in comfort care.

policies and guidelines, such as the exclusion ofparents from the cot side during lengthy wardrounds, should be reconsidered.

Transfer of ResponsibilityThe concept of family-centered care focuses par-ticularly on the importance of meeting the psy-chosocial and developmental needs of children,emphasizing the role of families in promoting theirhealth and well-being. The family is assumed to bethe child’s primary source of strength and supportand their perspectives are important in clinical de-cision making (Pettoello-Mantovani, Campanozzi,

& Maiuri Giardino, 2009). In a pediatric setting,the concept of family-centered care’ is generallyinterpreted as a means of complimenting the careprovided by the children’s family. In the NICU set-ting, however, care provided by parents is oftenconsidered to complement the care provided bythe nurse (Franck & Callery, 2004). One of the rea-sons for the difference in attitudes may be that itis difficult for parents in the NICU to establish theircaregiving role and develop knowledge of their in-fants that is equal to or greater than that of the pro-fessional caregivers. Nurses are then perceivedto be experts and parent perceived to be helpers.In this study, however, when parents and nurses



worked together to provide comfort, nurses be-came aware of parents’ expertise relating to theirinfants’ behavior and were able to gain new infor-mation directly from parents. During joint caregiv-ing times, nurses were able to directly observe thebenefits to the infant of parental involvement anda gradual handover of responsibility for providingcomfort.

As parents became increasingly confident in com-forting their infants, their individual expertise inproviding comfort was acknowledged and the in-formation they offered about their infants informednursing and medical management. They devel-oped a unique knowledge of their own infantsand used it to provide comfort in an appropriateway. Although the ability of parents to contributeto neonatal pain management and comfort careis not widely recognized, the pediatric literaturehighlights the value of parental involvement. Re-searchers such as Craig, Lilley, and Gilbert (1996)demonstrated how a parents’ rating of their child’spain are closer to the child’s than nurses’ ratings.Additionally, Carter, McArthur, and Cunliffe, (2002)described how the parents of children who find itdifficult to express their pain become skilled inassessing their children’s pain by learning abouttheir usual behavior and recognizing pain cues.Our findings demonstrate that parents in the NICUalso have specific expertise in relation to their in-fants’ pain and comfort needs.

Antecedents to AttachmentThe technological environment, the apparent ex-pertise of the staff, and the physical appearanceof a fragile preterm infant are potential barriers toattachment in the NICU (Kearvell & Grant, 2010).Findings from this study suggested that encour-aging parental involvement in comfort care fa-cilitates proximity, reciprocity, and responsibility,which are considered to be antecedents to at-tachment (Goulet et al., 1998). As parents becameinvolved with providing comfort, they recognizedthe need to spend long periods of time in closeproximity to their infants. Reciprocity, the processby which the capabilities and behavioral char-acteristics of the infant elicit parental response(Goulet et al.), was also facilitated as parents pro-vided comfort in response to their infants’ behav-ior and learned to interpret their responses. Reci-procity is often difficult to establish in the NICUbecause of the inability of the preterm infants toprovide behavioral cues or respond to caregivers(Bialoskurski, Cox, & Hayes, 1999). In this study,although preterm and sick infants were not capa-

Nurses’ encouragement of parental involvement in comfort carefacilitated parental proximity, parent/infant reciprocity, and

parental sense of responsibility.

ble of reciprocity in a similar way to well matureinfants, they expressed signs of discomfort thatcould be recognized by their parent. Responsibil-ity and the development of parental identity arealso difficult to establish in the NICU, particularlywhen care is provided by the nurse. Other inves-tigators have described how parent who feel ex-cluded from parenting activities often lack a senseof ownership and control of their infants (Fenwicket al., 2001, 2008). In this study, parents acceptedthe need for nurses to provide care, but when theybecame involved in comforting their infants, theyestablished their own roles as caregivers. This wasacknowledged by the nursing staff and responsi-bility for specific aspects of care such as comfortwas handed over and referred to as a parent’s job.

LimitationsUndertaking this study in the NICU where the mainresearcher worked as a nurse consultant meantthat participants may have felt unable to expresshonest feelings and staff may have felt obligedto act in ways which did not reflect their normalpractices. However, there did not appear to beany discrepancy between what parents said dur-ing interviews and what they did during observa-tions. Nor were any nursing actions identified thatdid not appear congruent with usual practice inthe unit at the time of the study.

ImplicationsOur findings lead to a number of implications forpractice, education, policy, and research. In rela-tion to practice, there is a need to facilitate parentaltime at the cot side, develop further strategies tosupport the reciprocal parent/infant relationship,and acknowledge the value of parental knowledgeand expertise. For education, findings suggest theneed to review the curriculum for neonatal nursetraining to focus on the emotional and psychologi-cal needs of parents, and an increased emphasison family-centered care. In terms of policy, thereis a need for standards for NICU design that willensure adequate space for parents at the cot side.Our findings also highlight the need for furtherresearch to explore the emotional needs of par-ents in the NICU and identify the wider benefits ofparental involvement.



ConclusionParental involvement in comfort care can aid theprocess of learning to parent, facilitate the transferof responsibility from nurse to parent, and assistthe establishment of attachment behaviors, all ofwhich have been identified as problematic in theNICU. This implies the need for a more parent-focused approach to neonatal care that recog-nizes not only the importance, but also the ther-apeutic value of parental involvement, particularlyin relation to pain management and comfort. Theimportance of the bedside as the place where par-ents develop a relationship with their infants andlearn how to confidently provide care was alsohighlighted. It is important that the bedside whereparents and nurses work together and learn to un-derstand the significance of each other’s role iscomfortable and welcoming. Strategies to enableparents to become more involved in their infants’care and spend more time at the bedside may re-quire substantial investment but are likely to haveto have widespread benefits to infants and theirparents.

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