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Intensive and Critical Care Nursing (2011) 27 , 143150

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ORIGINAL ARTICLE

A qualitative interpretive study exploring parentsperception of the parental role in the paediatricintensive care unit

Kaitlin E. Ames a , , Janet E. Rennick b , c, Sophie Baillargeon b

a Paediatric Intensive Care Unit, The Hospital for Sick Children, Toronto,Ontario, Canadab Montreal Childrens Hospital, McGill University Heath Centre, Montreal, Quebec, Canadac School of Nursing & Department of Paediatrics, Faculty of Medicine, McGill University, Montreal, Quebec, Canada

Accepted 15 March 2011

KEYWORDSParent experience;Parents perception;Paediatric intensivecare unit;PICU;Intensive care;Parental role

SummaryObjectives: The purpose of this study was to explore parents perception of the parental rolein a tertiary care Canadian university afliated hospitals paediatric intensive care unit (PICU).Research methodology: A descriptive interpretive design was used with a purposive hetero-geneous sample to reect the range of children and parents normally admitted to the PICU.

Semi-structured interviews were conducted with seven parents. Interview data were collectedand analysed using the constant comparative method.Findings: Three main themes emerged: (1) being present and participating in the childs care;(2) forming a partnership of trust with the PICU health care team; and (3) being informed of the childs progress and treatment plan as the person who knows the child best.Conclusion: Enhanced understanding of the parental role in the PICU from the perspective of parents can help guide the development of strategies to more effectively support parents andpromote parenting during this extremely stressful time. 2011 Elsevier Ltd. All rights reserved.

Introduction

Admission of a child to the paediatric intensive care unit(PICU) is an agonising experience for a parent. Fearful fortheir childs survival, and in a foreign and highly techni-cal environment, parents must surrender their responsibilityas protector and primary caregiver to healthcare profes-

Corresponding author. Tel.: +1 416-813-6486.E-mail address: [email protected] (K.E. Ames).

sionals ( Gillis and Rennick, 2006 ). Communication is moredifcult as children are often sedated and intubated, andtheir appearance, emotions and behaviours are often chan-ged. Parents may feel immobilised and experience a senseof helplessness in not knowing how to care for their child(Shudy et al., 2006 ).

Since the 1980s, parentshave consistently identied alte-ration in their role as they transition from being parent of a well child to parent of a critically ill child as a tremen-dous stressor ( Shudy et al., 2006 ). Despite this, few studieshave used qualitative methodologies to better understandthe nature of parental role alteration from the parents

0964-3397/$ see front matter 2011 Elsevier Ltd. All rights reserved.doi: 10.1016/j.iccn.2011.03.004
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144 K.E. Ames et al.

Table 1 Interview guide.

Question

1 Perhaps we can begin with your telling me a little bit about your experience in the PICU?2 As a parent you are used to taking care of your childs needs in a certain way and you make sure he/she is well looked

after. Yet, in the PICU, parents often say that so much of that changes. What has your experience been like?3 How would you compare the way you were able to look after your child in the PICU with how you are used to looking

after your child at home?4 Can you describe for me what you were able to do or to say that was important to you in caring for your child in thePICU? What were you unable to do or say that you would have wanted to?

5 Many parents describe that the way their child looks and behaves in the PICU is quite different from how they normallylook and behave and that this is quite stressful. Was this similar to your experience? How did this affect, if at all, theway you cared for your child?

6 Can you describe things that the health care team did that really helped or made it difcult for you to care for yourchild in the way you wanted to?

7 Is there anything else that the health care team could have done to support you in taking care of your child in the PICU?8 Is there anything else you would like to add?

perspective. Since nurses are in a primary position to facili-tate parenting, an enhanced understanding of parental rolealteration from the parents perspectives would help directnursing interventions to support parenting in the PICU.

Literature review

A recent systematic review found the majority of studieson parenting the critically ill child focused on identifyingparental stressors, needs and coping strategies ( Shudy etal., 2006 ). In particular, Miles and Carters (1982) Paren-tal Stressor Scale: Paediatric Intensive Care, has been usedextensively to quantify the prevalence of parental stressors.

Whilst parental role alteration is repeatedly identied byparents as their greatest stressor, the measure provides littleinsight into the nature of that role alteration.

Other studies have used qualitative methodologies toexplore families and parents PICU experiences. Roden(2005) f ound that parents understood their role to be whatthey would normally do at home; that is, mothers do themothering and nurses do the nursing. Findings emphasisedthe importance of nurses and parents clarifying their roleexpectations at the beginning of their relationship to faci-litate communication and overall care of the family in thePICU. However, studies eliciting the desired roles and expec-tations of parents from their perspective remain scarce.

Snowdon and Gottlieb (1989) identied six typesof parental roles in the PICU: vigilant parent,nurturercomforter, medical parent, caregiver, enter-tainer and protector. This study contained an observationalcomponent that facilitated the identication of situationalfactors that may have contributed to altering the parentingrole, including procedures at the bedside and the presenceof family and friends.

Facilitators and barriers to parenting in the PICU havealso been identied. Noyes (1999) f ound the parental rolewas inuenced by factors external to the parentchild sub-system, such as events preceding the PICU admission andthe parents family support network. Mu et al. (1997) f oundparents perceptions of disempowerment and loss of the

parental role led them to expand their familys boundaryand build shared patterns of caregiving interactions with thePICU nurses. Tomlinson et al. (1999) reported that parentsresponses to surrendering their primary caregiving role inthe PICU were not only affected by how nurses supplemen-ted their role, but by how effectively nurses aided them inretaining their role as a parent.

Whilst these studies highlight the importance of inter-vening to help parents establish their role in the PICU,our understanding of parents expectations and perceptionsremains limited. This knowledge would allow clinicians towork with parents more effectively and support their essen-tial contributions to their childs care.

The purpose of this study was to gain an in-depth unders-tanding of parents perception of the parental role whenthey have a critically ill child in the PICU. The research ques-tions were: (1) what are parents perceptions of their rolein the PICU? (2) How do parents perceive their role to havebeen altered in the PICU? (3) What can nurses do to facilitateparenting in the PICU?

Methods

Design

A qualitative interpretive design was used to capture thecontextual and unique nature of each parents experience,

whilst elucidating the shared realities of similar health-illness experiences within the PICU ( Sandelowski, 2000;Thorne et al., 1997 ).

Sample

Children are admitted to the PICU with a wide range of medical diagnoses, ranging in age from infancy to 17 years;therefore, purposive sampling was used to ensure partici-pants would reect this heterogeneous group. Parents wereincluded who spoke English, and whose child was being pre-pared for PICU discharge. Parents of children admitted forsuspected abuse were excluded.


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Parents perception of the parental role in the PICU 145

Table 2 Demographic information.

Parent Child diagnosis Child age PICU lengthof stay

Previous PICUadmission

Planned/emergencyadmission

Siblings

Dad 38 years,married

Motor vehicleaccident withhead injuries (left

frontal lobecontusion,occipital fracture,brain oedema)

4 years 11 days No Emergency 3 brothers (15,11, 8 years)

Mom 26 years,married

Post Glennprocedure forhypoplastic leftheart syndrome

6 months 3 days Yes Planned 2 brothers (18months and 3years)

Mom 34 years,married

Coarctation of theaorta

13 days 8 days No Emergency 1 brother (2years)

Mom, married Post-operativetongue reductionand opioidwithdrawal

6 months 7 days Yes Planned 2 siblings (9and 4 years)

Dad 53 years,divorced andremarried

Septic shock 13 years 5 days Yes Emergency 1 brother 16years)

Mom, married Respiratorydistress

3 months 6 days Yes Emergency 1 brother (31/2 years)

Mom 40 years,divorced

Pneumonia andcollapsed lungpost-surgicalextubation

16 years 9 days Yes Emergency 1 sister (12years)

Data collection

Ethical approval for the study was obtained from thehospitals Research Ethics Board, and written informedconsent was obtained from each parent prior to commencingdata collection. Data were collected using in-depth semi-structured interviews. Interview questions ( Table 1 ) weredeveloped to ensure that various dimensions of the paren-ting experience were explored, whilst allowing parents tofreely describe their own unique experiences ( Morse andField, 1995 ). Follow up questions and probes were used tofurther explore salient and relevant issues raised by parents(Rubin and Rubin, 2005 ). Interviews lasted between 25 and60 minutes and were audio recorded. Field notes were recor-ded upon completion of each interview.

Data analysis

Data were analysed using the constant comparison methoddescribed by Burnard (1991) . Audiotapes were transcribedverbatim and all textual data (transcripts and eld notes)were read in their entirety. Line-by-line coding of the rawdata was completed and comments or statements describingthe parental role and facilitators of that role were identi-ed. Using open and axial coding, all text deemed relevantto the research questions was highlighted and given a pro-visional label, remaining as close to the original data aspossible. Codes for all of the textual data were combined

and clustered into themes by the research team ( Corbin,1986).

Evaluation of rigour

To increase credibility, eld notes and transcripts were com-pared and combined to create an accurate representationof the parents experiences. Investigator triangulation wasused to reduce the likelihood of biased interpretation of the data ( Polit and Beck, 2004 ). Conrmation of preliminaryinterpretations from early interviews was sought throughmember-checking with parents of later interviews. An audittrail of interview transcripts, eld notes, data reduction andinvestigator documentation was systematically collected toensure dependability ( Polit and Beck, 2004 ).

Results

Parents of seven children hospitalised in the PICU of a ter-tiary care, Canadian university afliated paediatric hospitalwere recruited. This sample size allowed for a rich and holis-tic understandingof the parental experience, and facilitateda meaningful case-oriented analysis ( Sandelowski, 1995 ).Parents ranged in age from 26 to 53 years, and childrenfrom 13 days to 16 years. Children had a variety of medicaldiagnoses (see Table 2 ).

Parent interviews revealed experiences lled with arange of emotions from fear, guilt and helplessness to relief,


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hope and cautious optimism. Parents consistently statedthat their greatest concern was the survival of their child,and that their role as a parent was to ensure their childwas well cared for. Whilst each parent prefaced his or herinterview with a similar assertion that their role was limitedin the PICU, their narratives revealed that they perceivedthree important dimensions of the parenting role: (1) beingpresent and participating in the childs care; (2) forming a

partnership of trust with the PICU health care team; and (3)being informed of the childs progress and treatment plan asthe person who knows the child best. Ways in which theparental role can be facilitated by the PICU staff are alsoidentied within each dimension.

(1) Being present and participating in the childscare in the PICU

Parents actively sought ways to interact and be present withtheir child who was often heavily sedated, and connectedto various tubes and monitors in the foreign environment of the PICU. In particular, knowing they were doing somethingimportant for their child was a recurrent theme. Parentsdescribed three principal ways in which they participated intheir childs care: (a) just being there and providing com-fort, (b) active caring and (c) providing explanations andreassurance to their child.

(a) Just being there and providing comfort.In the words of one mother, Being a parent is just

being there and talking with him. When asked to des-cribe what they were able to do with their child in thePICU, the rst thing all parents said was just beingthere. As expressions of comfort, this meant sittingwith their child, watching over him/her, praying for

him/her, touching his/her hand, talking to him/her, andtelling him/her mommy (or daddy) loves you, evenif the child was sedated. One mother poignantly statedthe importance of being there: Hes my boy, and I amthe mother. I know he sees that I will be there for him. . . Hes sleeping but I know he sees I am beside himand I take care of him, and that is the most importantthing. Although being present with their child was veryimportant to parents, many underscored the helpless-ness they felt to do much more than that. In particular,parents mourned not being able to hold their child either because the child was intubated or because of other contraindications. One mother lamented, Thatwas probably the hardest, not being able to hold her.Especially when she . . . when you could see that she wasuncomfortable. You know? She was looking at you like,Why arent you picking me up? Whats going on here?This resulted in what one father described as a sense of powerlessness.

(b) Active caring.Many parents described being able to actively care

for their child, although for some this was not possibleuntil their childs medical condition stabilised. Parentsof younger children expressed satisfaction in bathingtheir child and changing diapers. One mother explained,Ive participated in her care . . . You know, obviously Icant administer drugs or anything like that, but if I want

to [I can] feed her, hold her or calm her down. A parentof an older child who helped staff weigh his son stated:I would help with the tubes, and roll and help lift him.I actually felt like I was helping out with something. AndI think my son knew I was there too. So I felt very, I feltgood about that.

Parents sometimes found it difcult to interact withtheir child due to fear of interfering with monitoring

equipment and access lines. They were unsure of whenand how to touch their child. One mother explained:

I would have liked topick him up . . . I had toask atthebeginning, Can I touch him? Can I hold his hand? CanI do it? And they said yes. Maybe telling me before you can do this, like, because youre so scared of doing something wrong.

(c) Providing explanations and reassurance to their child.Parents also had a role in explaining things to their

children and reassuring them. One parent described hel-ping his son struggle through existential questions andthe expectation of a long recovery using words such as,You will get through this and Its nobodys fault,not yours. The doctors did the best they could, youwere sicker than they thought, or you thought you were. . . but now youre on your way. This father also sta-ted that parents have a role in helping their childrenexpress their emotions: [Its important for] one of us,like parents, me being there or his mom being there. . . so he can actually let go a little bit, and cry a lit-tle bit. Parents with younger children often reassuredtheir child through their presence at the bedside.

(2) Forming a partnership of trust with the PICUteam

In addition to participating in the childs care, part of theparental role included forming partnerships based on trustwith the PICU team. Parents recognised their childs criticalillness necessitated the acute medical and clinical expertiseof the health care team. However, they also realised theirchilds well-being was dependent upon their own contribu-tion to care, including: (a) sharing their expertise as thechilds parent, (b) building trust with the team and (c) takingcare of themselves.

(a) Sharing their expertise as a parent.Parents emphasised that as the parent, they had

knowledge about their childs nature that the PICU staff did not. Sharing this expertise was an important part of their parental role. One mother explained:

[The physician] sometimes asked for my opinion,because he knows its my child . . . I know what theproblem is with my child. . . . I know whats happeningwith my child because I am with him [all the] time.. . . I know the situation. I know when he is a little bitdown and when he is going to go very bad. I see thelittle things . . . I am the mother!

Parents described an eagerness to share their childsunique cues and indicators of pain and discomfort. Oneparent explained, I know that she never cries, so if


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shes crying that means that she is uncomfortable . . .She usually only cries if she is hungry, tired or uncom-fortable. Parents shared their childs likes and dislikes,giving suggestions to nurses about what would maketheir child more comfortable. Parents identied a num-ber of ways in which their expertise was elicited by staff,including: being asked what their child normally did athome, being included in the assessment of their childs

physical condition, being encouraged to contribute totheir childs well-being through normal parental acti-vities such as feeding, and lastly, in the words of oneparent, helping me to focus on the baby and not themonitors.

(b) Building trust with the team.In addition to sharing their expertise with the team,

part of parenting in the PICU included relinquishingcontrol as primary care provider and trusting the healthcare team to take over. One mother poignantly descri-bed this:

. . . its difcult as I usually control all of As care . . .to relinquish some portion of that for medications

and for decisions that just by their medical trainingIm not equipped to make. Just that, in your mind,is difcult because youve given over control of yourchild whom you usually look after to that person. Butthe nursing staff has been very good about letting medo the things that I am skilled to do.

Most parents described managing multiple parentingdemands whilst their child was in the PICU. Theseincluded taking care of other children, attending tohousehold responsibilities or gettingrespite and nourish-ment. When leaving the PICU, parents felt an importantpart of their role was ensuring their child was safe. Onemother described how she would carefully observe the

staff taking care of her child: Like if its someone new,you watch them . . . and then the next day, its still them.So its good . . . they have seen her and taken care of hermore than once, so that helps. Parents also neededto ensure the staff member caring for their child knewabout the childs nature and ways they preferred to becomforted.

Trust was fostered through interactions with thehealth care team. One mother described how a nursetried to emulate her way of comforting her child.

Oh, I denitely trust them . . . I saw [a nurse] yes-terday trying to hold her the same way I would and,you know, comforting her. I had left for coffee and

she had woken up and the [the nurse] told me to go[again] and have a break, and I did.

(c) Taking care of themselves.When parents felt cared for, such as being asked daily

how they were coping, they felt better able to parenttheir child. In order to be present and interact with theirchild, parents recognised they had to take time out forrespite and to manage other demands. One mom descri-bed it as a balancing act in which taking care of herself was always the last priority.

If he was home, then I would be the one if hes crying,and I would be the one if hes hungry . . . and the

fact that I left him last night for the rst time, Imscared of that bonding being altered . . . You know itsbalancing the bonding with him, and its balancingthe security of my other child, you know? And itstaking care of me. That comes last . . . So we calledhere, and they were good at explaining Hes calm,hes ok, hes sleeping. You can call all night if youwant.

In addition to being able to call 24-hours a day,parents described several ways they received care fromstaff, including: being encouraged to get respite, havingsomeone present to answer questions, being providedwith explanations of procedures and interpretation of results, and being reassured of the normalcy of theirchilds behaviour and responses to treatment.

(3) Being informed of the childs progress andtreatment plan as the person who knows thechild best

An important dimension of the parental role was acquiringinformation and gaining knowledge about the childs treat-ment and recovery in the PICU. Parents described their roleas knowledge seekers, including: (a) knowing their childsstatus, (b) understanding the care provided to their childand (c) knowing what to expect next.

(a) Knowing their childs status.Parents were adept at monitoring their childs condi-

tion in the PICU. They sought information about theirchilds physiological status by continuously observingtheir child, reading the cardiac monitors and askingstaff, Is that normal? and What does that mean?Parents quickly learned what were considered goodvalues for their child. Knowing how to interpret themonitors was important because it allowed parents toindependently evaluate how well their child was doing.One father described reading the monitors whilst hisdaughter was sedated to reassure himself that she wasstill alive.

I think I tried to get only the essentials of being alive. . . the heartbeat, the blood pressure, that kind of thing. Not more than that . . . I didnt want to askevery single detail. Just wanted to know, is she alive?

Parents also ascertained their childs status by sur-veying the number of wires and tubes connected to their

child. One mother explained that the number of intra-venous lines for medications upon her childs admissionwas overwhelming but as she saw the number becomeless, this was an indication of her childs recovery.Parents also observed the number of staff members andthe intensity of their actions as indicative of their childsstatus. One mother stated:

You just saw ve people around, working all the time,and I think that was hard for us. We had troublestaying there because we panicked the whole time. . . The tubes were ok, its the reactions . . . becauseit looked really serious by the amount of people thatwere there . . .


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All parents emphasised that frequent feedback fromstaff was critical in helping them understand theirchilds condition and relieving their sense of helpless-ness.

(b) Understanding the care provided to their child.In addition to knowledge regarding their childs sta-

tus, it was important for parents to understand the carethat was being provided to their child. Parents descri-

bed how being educated about medical interventionssuch as intubation, sedation, opioid use, intravenouslines and chest tubes led to an understanding of theirchilds appearance and behaviours. This, in turn, hel-ped moderate parents emotional reactions and allowedthem to care for their child. One mother described theimportance of understanding her daughters morphinewithdrawal reaction following surgery: I didnt wanther to have to go through withdrawal, but I understoodwhy . . . Maybe if I [had not been] educated I would beangry. Understanding her daughters reactions helpedthis mother to remain present and comfort her daughter.

Parents sought knowledge about their childs care bybeing assertive and asking questions, and being presentand actively listening. Prior experience with health careproviders gave some parents more condence to askquestions; however, the amount of information parentswanted varied, with some wantingonly basicsand otherswanting to know everything. It wasevident that someparents had learned the language and routines of thePICU to gain the information they wanted. For example,parents recalled the names of medications and routes of administration, their side effects and the physiologicalindicators of their effectiveness. Despite learning somemedical language, parents noted how important it wasfor staff to explain the care in simple terms. One fatherdescribed how medical staff came down to his level

in the language they used to describe his childs care.So we werent in the dark . . . they would hold theirlittle conferences . . . and theyd all talk shop. Theydtalk about this and that, and we gave him potas-sium, and other technical terms which I dont know,but then theyd take the time, come down , [ita-lics added] and the doctor would say, Well whatwe were talking about was this, and they wouldexplain, This is whats happening now, this is whatwere doing here . . . that was a calming thing.

Parents found this knowledge helped them feel lesshelpless and provided some direction for participating intheir childs care. One parent said, With him, I cant[do a lot] right now. I know I cant, and I dont knowif I would want to yet because of the arterial line andeverything, you know? Just touching and talking to him,and feeding him for now is ok.

(c) Knowing what to expect next.Acquiring knowledge about what to expect in the

PICU was an ongoing process for parents. Commonly,parents reported having received anticipatory informa-tion regarding their childs appearance and the PICUenvironment, but emphasised that they had needed tocontinue asking questions throughout their childs stay.One parent commented, when your kid . . . comes here. . . they tell you so much information sometimes . . . its

just a blur. And I think it is really important that there isa person that will answer the questions . . . on an ongoingbasis.

Knowledge often had an empowering quality forparents, especially the wisdom they gained fromprior PICU experiences. Three parents explicitly sta-ted they experienced a difference in their reactionsand responses between their rst and subsequent expe-

riences, the rst being more of a shock and moretraumatic. Their familiarity with the PICU gave themcondence to seek information and participate in theirchilds care. Parents with experience felt condent,for example, making suggestions to nurses about whatwould make their child more comfortable. However,prior experience was not always helpful. One parentdescribed his childs second PICU admission as just astraumatic as his rst. This parent struggled with memo-ries of a previous intensive care unit experience withanother family member in which the outcome was notfavourable. In general, previous positive PICU expe-riences helped parents feel better prepared for whatthey would see and experience, which, in turn madethem feel less helpless.

Discussion

Results of this study provide insight into the parental rolefrom the perspectives of parents with a critically ill child inthe PICU. Commonly, parents felt this was a time when theiremotions, combined with the medical complexity of theirchilds needs, were overwhelming. Yet all study participantsfelt that parenting their critically ill child was of fundamen-tal importance. This consisted of being present and activelyparticipating in their childs care, forming a trusting partner-ship with the PICU team, and keeping abreast of their childsprogress and treatment plan as the one who knows thechild best.

Parental contributions to the care of their child inthe PICU

An important aspect of a collaborative partnership involvesnot only the two-way sharing of expertise, but sharing thephysical care of the child as well. Power and Franck (2008)dened parental participation as the physical, psycholo-gical and social activities performed by parents to improvethe health and/or psychological well-being of the child . . .Parents in this study rmly believed that actively participa-ting in their childs care wascrucial to their childs emotionaland physical well-being. Indeed, one study has identiedbenets of parental participation in PICU care, includingreduced parent and child anxiety, decreased length of stay,and decreased tension between parents and staff when roleexpectations are unambiguous ( Just, 2005 ); however, thedenition and benets of parental participation in the PICUhave not been well established.

Studies in the adult intensive care unit (ICU) literaturereveal that family members often wish to participate in thecare of family members, and perceive participation as posi-tive, productiveand supportive of their relationship with thepatient ( Van Horn and Kautz, 2007 ). Findings of the current


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study suggest that, despite the complexity of their childsneeds and their states of overwhelming stress, parents alsoexpress an earnest desire to be involved in their childs care.Parents felt that by being involved, they experienced a grea-ter sense of purpose in their role.

Whilst parents wished to be involved in providing care,they often felt unsure when and how to touch, hold or inter-act with their child. They said it would be helpful to receive

this information from staff as early in the childs PICU stay aspossible. Parents found it helpful when staff provided oppor-tunities for parents to engage in such activities as feeding,holding, bathing, reading to and talking to their child.

Sharing their parental expertise

Parents suggested that when PICU staff valued their inputand insight or took their suggestions into consideration, theyfelt more efcacious as a parent. Parents relied on the medi-cal expertise of the PICU team, but perceived that as aparent, they had expertise about their child that the staff could not have insight that they believed could improve

their childs care. For example, one mother talked about herunique ability as the childs mother to pick up on subtle cuesfrom her son that indicated his level of physical distress orcomfort. Another mother spoke about knowing her daugh-ters nature, something that she did not feel the staff would know without her input. Parents described their rolein terms of being sensitive and responsive to their childsunique cues and sharing this information with the healthcare team. In so doing, parents worked in tandem with thehealth care team and felt they were protecting their childand ensuring he/she received the best care possible.

Study ndings suggest it is important that parents form apartnership with the PICU staff in caring for the sick child.In the general nursing literature, a collaborative partnershiphas been dened as an interpersonal relationship betweentwo or more people who work together towards a mutuallydened purpose ( Gallant et al., 2002 , p. 151). In the PICU,that mutual purpose can be understood as providing the bestcare possible for the child from a holistic perspective.

Parents described several ways in which the PICU teamcould facilitate this aspect of the parental role, inclu-ding eliciting parents opinions in the teams daily physicalassessments of the child, and valuing parents insight abouttheir childs nature and personality. In the adult ICU lite-rature, Williams (2005) looked at the contribution familiesmake to the care of their loved one in the ICU from thenurses perspectives. Nurses noted that families provided

invaluable information about the patient as a person andthis, in turn, helped them respond more appropriately tothe patients needs. In addition, this process of sharing wasconsidered vital to both the nursefamily relationship andnursepatient relationship in that it engendered trust in thenursing care provided. It was hypothesised that this, in turn,was related to improved outcomes for the patient and thefamily.

Obtaining information about their child

PICU research conducted to-date has emphasised the impor-tance of maximising the provision of information to parents

to reduce their stress, anxiety and sense of helplessness(Shudy et al., 2006 ). Certainly the importance of providingtailored information to parents on an ongoing basis cannotbe overemphasised. Parents in this study wanted to knowabout their childs physiological status and test results, whattreatments were being provided, and the reasons for thosetreatments. They also wanted anticipatory guidance on whatto expect regarding their childs recovery, and to understand

goals the team had established for their child that wouldindicate recovery was taking place.

However, our ndings emphasise that information aloneis not sufcient to support parents in the PICU. One inter-vention study that was successful in reducing parental stress(Curley and Wallace, 1992 ), focused on enhancing the dyna-mic and reciprocal interaction between parents and nursesin the PICU. As one mother from our study emphasised, it isthis personal contact and interaction with PICU staff that isimperative in supporting the parental role.

Limitations and further research

The parents role in the PICU is inuenced by dynamic rela-tionships and interactions with the child and with membersof the health care team. This study did not include an obser-vational component, which may have yielded a richer andmore complete contextual understanding of the parentalrole in the PICU. In addition, the scarcity of information onthe parental role in the PICU directed the research to includea heterogeneous sample of parents. Although not a focusof the current study, results do suggest prior PICU expe-rience generally helps inform parents of their role duringsubsequent PICU admissions; however, one father describedhis previous experience as unhelpful and felt it contribu-ted to anxiety. Further studies with larger sample sizesthat seek to include PICU sub-populations are necessaryto determine how the parental role is impacted, and howparticipation varies between parents whose child is admit-ted for the rst time and those who have had previousexperiences. Similarly, perceptions of parents whose childsadmission was planned versus those whose admission wasunplanned may differ in terms of role expectations; or, per-haps there is a trajectory along which role expectationsdevelop and unfold, based on the length of time the childis in the PICU, and the parents experience and comfortlevel. Other variables that may impact the parental roleinclude parents marital status, the childs diagnosis andage. Grounded theory methodology may be useful in elici-ting this information. Finally, future research might focus on

the effect of parental participation on the care of the child.

Conclusions

Building on previous research that consistently identiesparental role alteration as parents greatest stressor duringa childs PICU hospitalisation, this study provides new insightinto parents perceptions of how their role may be alte-red, and the resultant implications for clinical practice.Three dimensions of the parental role in the PICU wereidentied, including being present and participating in theirchilds care, building a trusting partnership with the healthcare team so they can share their parental expertise, and


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being informed of their childs progress and treatment planto enhance the reciprocal relationship between parentsand staff. Parents identied corresponding facilitators of parenting, such as guidance to participate in their childscare, inclusion of parents expertise by staff in their assess-ments of the child, and provision of tailored information.Understanding parents perceptions of their role can pro-vide invaluable insight into their experiences, ultimately

directing staff to facilitate parenting in the PICU.

Funding

K.E. Ames was funded for this study by Groupe de RechercheInteruniversitaire en Interventions en Sciences Inrmiresdu Qubec (GRIISIQ) and the Canadian Nurses Foundation(CNF), Nursing Care Partnership Program.

J.E. Rennick is an FRSQ Clinical Research Scholar,and holds a New Investigator Award from Sick KidsFoundation/IHDCYH-CIHR National Grants Program. Dr. Ren-nick is a member of the McGill University Health CentreResearch Institute, which is funded by the FRSQ.

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