Are parents doing what they want to do? Congruency between parents’ actual and desired participation in the care of their hospitalized child

2014

Issues in Comprehensive Pediatric Nursing, 2014; 37(2): 103–121

� Informa Healthcare USA, Inc.

ISSN: 0146-0862 print / 1521-043X online

DOI: 10.3109/01460862.2014.880532

ARE PARENTS DOING WHAT THEY WANT TO DO?CONGRUENCY BETWEEN PARENTS’ ACTUAL ANDDESIRED PARTICIPATION IN THE CARE OF THEIRHOSPITALIZED CHILD

Daria Romaniuk, RN, PhD1, Linda O’Mara, PhD, RN

2, andNoori Akhtar-Danesh, PhD

2

1Daphne Cockwell School of Nursing, School of Nursing, RyersonUniversity, Toronto, Ontario and 2Faculty of Health Sciences, School of

Nursing, McMaster University, Hamilton, Ontario, Canada

Family-centered care is integral to pediatric nursing practice, and includes

supporting parents to participate in their hospitalized child’s care.

Research to date suggests that parents’ actual participation in care may

differ from their desired participation in care, and that such discrepancies

may cause parental distress. Supporting parental participation in a way

that facilitates congruency between actual and desired participation

may contribute to a satisfying experience for families of hospitalized

children. This cross-sectional study measured parents’ actual and desired

level of participation in care of their hospitalized child and examined

the congruency between them. Participants (N = 191), the majority of whom

were mothers, provided demographic data and completed two instruments

measuring desired and actual participation in care. Study results indicate

a significant difference between parents’ actual and desired participation

(t =�9.382, df = 190, p50.0001). The majority of parents expressed a

desire to increase their participation. The care activities in which these

parents participated are described, including providing comfort, assisting

with activities of daily living and advocating for their child. Nurses caring

for hospitalized children and their families need to remember that parental

preferences for participation will vary, and they need to be prepared to

support parents’ participation at the level parents choose. Understanding

Correspondence: Daria Romaniuk, School of Nursing, Daphne Cockwell School of Nursing,Ryerson University, 350 Victoria St., Toronto, Ontario, Canada, M5B 2K3. E-mail:[email protected]

Received 11 October 2013; revised 20 December 2013; accepted 23 December 2013

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congruency between actual and desired levels of participation can promote

awareness of parents’ preferences for participation.

Keywords: Family-centered care, hospitalized child, parental participation

INTRODUCTION

Family-centered care (FCC) has existed in children’s hospitals for wellover half a century. While it is considered to be the best approach tosupportive care of children and families, it continues to pose challengesin implementation. One aspect of FCC that presents particular challengesat the bedside is parental participation in care of the hospitalized child.Research suggests that parents are not always participating in theirchild’s care in the way they would like. A comparison between actualand desired participation in care, which we refer to as ‘‘congruency,’’may provide insight into the implementation of FCC at the bedside. Thepurpose of this article is to introduce the concept of congruency betweenparents’ actual and desired participation in the care of their hospitalizedchild and to report a study that examined congruency.

The need to provide emotional support to the child is an importantmotive for parents, driving their decision to stay with their child and toparticipate in care (Aein et al., 2009; Coyne, 1995; Coyne & Cowley,2007; Lam et al., 2006; Romaniuk & Kristjanson, 1995). Most parentsreport that they are comfortable providing care related to activitiesof daily living (Blower & Morgan, 2000; Coyne & Cowley, 2007;Kristensson-Hallstrom & Elander, 1994) but are less eager to participatein more technical aspects of care, such as giving medications or changingdressings (Coyne & Cowley, 2007; Kristensson-Hallstrom & Elander,1994). Parents of chronically ill children whose day-to-day routinesinclude such technical care are more likely to take on that care in thehospital (Coyne, 1995; Coyne & Cowley, 2007)

How parents determine the extent of their participation in care canbe greatly influenced by their perceptions of the assumptions andexpectations of nurses, (Aein et al., 2009; Avis & Reardon, 2008; Coyne& Cowley, 2007; Neill, 1996; Roden, 2005; Romaniuk, 1993; Ygge &Arnetz, 2004) or their need to make certain that their child receivesnecessary care in a timely manner (Aein et al., 2009; Lam et al., 2006;Ygge & Arnetz, 2004). Coyne & Cowley (2007) described how parentswould provide care that they were not entirely comfortable with if theysensed it was the nurses’ expectation, doing so out of fear that the carewould otherwise not be done. Parents in Coyne and Cowley’s study alsoreported a fear of displeasing the nurse by not doing a task they were

104 D. Romaniuk et al.

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expected to do, or by providing care that the nurse saw as part of‘‘professional territory’’ (p. 898). Sousa et al. (2013) reported thatapproximately one third of the parents in their study reported feelingdiscomfort at the prospect of telling the nurses they preferred notto participate in care. Parents who labeled certain tasks as part of thenursing role would not take on those tasks, as they were fearfulof overstepping boundaries (Blower & Morgan, 2000; Coyne, 1995;Coyne & Cowley, 2007; Roden, 2005). In some cases parents reportedthat despite their interest in learning a particular care activity, they werereluctant to disturb the nurses with questions and thus did not expandtheir role (Blower & Morgan, 2000; Neill, 1996).

For parents who take on or give up care activities based on theirperception of what is expected of them, fears for the quality of theirchild’s care, or reluctance to approach nurses with questions, parentalparticipation in care may become a stressful obligation rather thana supportive parental activity. This study is based on the premise that tofully understand parental participation, both the actual participation andthe desired participation must be considered. Congruency or the overlapbetween parents’ desired and actual participation, may represent nurses’and parents’ successful interactions regarding preferences for parents’participation in a child’s care. Examining congruency may expand ourunderstanding of parental participation in care. The purpose of thisstudy was to examine the congruency between parents’ actual levelof participation and their desired level of participation, as a first stepin examination of the concept.

METHODS

Design and Setting

A cross-sectional design was used for this study, as it was appropriate fordescribing the variable of congruency with a one-time measurement(Polit & Beck, 2004; Wood & Ross-Kerr, 2006). The research questionfor the study was ‘‘What is the congruency between parents’ desired andactual levels of participation in their child’s care?’’ The hypothesispredicted that parents’ actual level of participation will differ from theirdesired level of participation.

Ethical Considerations

Ethical approval for the study was obtained from the hospital’s ResearchEthics Board (REB). The process involved the unit charge nurseproviding potential participants with a flyer that introduced the study;

Congruency between Parents’ Actual and Desired Participation 105

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this was consistent with the hospital REB’s requirement that the studybe introduced by a person within the participant’s circle of care. Theresearcher or research assistant approached potential participants onlyafter they had received the flyer. The study was further explained topotential participants and they were invited to participate. Participantswere assured that their decision regarding participation in the studywould not affect their child’s care, and that they could refuse to answerany questions or withdraw from the study at any time. Individualswho chose to participate signed a written information/consent form.Participation in this study posed no identified risks. Questionnaires andchart data were identified by code to maintain confidentiality.

Procedure

Participants completed a demographic questionnaire to provide descrip-tive information about themselves (including relationship to child, age,marital status, employment status, level of education, and travel timeto hospital) and their child (including age, length of stay, gender,previous hospitalizations, and number of children in family). These datawere supplemented by a chart review to identify the child’s admittingdiagnosis (used to determine if the illness was acute or chronic) and toestablish whether the admission was planned or an emergency.

Participants also completed two measurement instruments whichwere adapted from the Index of Parent Participation/HospitalizedChild (IPP/HC) (Melnyk et al., 2004) with permission from its author.The IPP/HC was selected after a review of the literature revealed thatof the few existing instruments measuring parental participation incare, the IPP/HC was the only one for which validity and reliability datawere available. The IPP/HC was used in its existing format to measureActual participation (IPP/HC-A), and was adapted to measure Desiredparticipation (IPP/HC-D) by changing instructions and tense. Both theIPP/HC-A and the IPP/HC-D are comprised of checklists of 36 activitiesthat parents might perform while caring for their child in hospital.In the IPP/HC-A, participants were asked to check the activities theyparticipated in during the last 24 hours, while the IPP/HC-D askedparents to check the activities they wanted to participate in during thesame time period. Both tools provided space at the end for parents toidentify activities they did or wanted to do but that were not includedin the checklist. The score for each checklist was determined by countingthe number of activities checked—the higher the number, the higherthe parental participation score, with possible scores ranging from 0 to36 (Melnyk et al., 2004). In the current study, internal consistency wasdetermined using Cronbach’s alpha, with alpha coefficients of 0.90 and


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0.91 for the IPP/Actual and IPP/Desired respectively. Melnyk et al.(2004) reported a Cronbach’s alpha of 0.85.

Statistical Analysis

The summary statistics of the data collected via participant self-reportand chart review were reported using mean (SD) for continuous variablesand frequency (%) for categorical variables. For each participant, thescores on both the IPP/HC-A and the IPP/HC-D were determined, andthe hypothesis was tested by comparing the mean score on the IPP/HC-Aand the IPP/HC-D using a paired t test. Parent participation activitiesidentified by participants in the open-ended questions at the end of thetool were examined using content analysis.

Comparisons of Actual and Desired participation were made for typeof illness (acute or chronic), child’s gender, and type of admission(planned or emergency) using t test. Paired t test was used to comparebetween Actual and Desired participation for each level of demographiccharacteristics, while ANOVA was used to compare within parentemployment status (full-tine, part-time, or unemployed), parent level ofeducation (high school/less than high school, college diploma/universitydegree, or graduate degree), child’s age (536 months, 31–72 months,72+ months) and child’s history of hospitalization (no previoushospitalizations, one previous hospitalization or more than one previoushospitalization). Statistical programs of SPSS (version 15.0; SPSSInc.2006, Chicago IL.) and Stata SE/12.1 (Stata Corporation, 2011,College Station, TX) were used to complete data analyses.

RESULTS

Sample and Setting

The setting consisted of two acute-care inpatient units in a pediatrictertiary care hospital in southern Ontario, Canada. Children admitted tothese units required care for a wide variety of medical and surgical healthproblems. Family-centered care was an integral part of nursing practiceon both units.

A convenience sample of 191 parents (defined as a caregiver whoremained in hospital with the child for extended periods of time andparticipated in his/her care) was recruited consecutively over a 1 yearperiod. A total of 230 questionnaires were distributed, with a completionrate of 83%. Inclusion criteria specified that parents could participateif they spoke and read English, if their child was 12 years old oryounger and had been on the unit at least one day prior to data collection.


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Parents experiencing unusual stress (e.g., their child was receivingpalliative care or had just been diagnosed with a life-threatening illness)were not approached to participate.

The majority of participants in this study was aged 21–40 years(75.4%), in a married or common-law relationship (86.4%), and livedan hour or less from the hospital (81.2%). The sample consisted mostlyof mothers (84.3%). Participants reported varied employment statusand level of education (Table 1). Participants’ children (Table 2) ranged

Table 1. Characteristics of participants(N = 191)

Variable n %

Relationship to Child

Mother 161 84.3

Father 24 12.6

Other 5 2.6

No response 1 0.5

Age of Caregiver

20 yrs or less 9 4.7

21–30 years 44 23

31–40 years 100 52.4

41–50 years 36 18.8

51 yrs or more 1 0.5

No response 1 0.5

Marital Status (condensed)

Single (never Married) 15 7.9

Married 137 71.7

Common-law 28 14.7

Divorced/Separated 8 4.2

Widowed 2 1

No response 1 0.5

Employment Status

Full-time 64 33.5

Part-time 24 12.6

Stay-at-home parent 63 33

Looking for work 3 1.6

Other 36 18.8

No response 1 0.5

Level of Education

Less than High School 16 8.4

High School Diploma 56 29.3

College Diploma 56 29.3

University undergraduate degree 28 14.7

University graduate degree 29 15.2

Other 5 2.6

No response 1 0.5


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Table 2. Characteristics of children of participants(N = 191)

Variable n %

Age of Child (years)

�1 72 37.7

41–53 30 15.7

3–56 37 19.4

6–8 20 10.5

9–12 31 16.2

Missing data 1 0.5

Length of Stay at Time of Questionnaire Completion (days)

1–3 104 54.5

4–7 44 23

8–14 20 10.5

�15 9 4.7

Missing data 14 7.3

Child’s Gender

Female 82 43

Male 107 56

Missing data 2 1

Number of Previous Hospitalizations

0 76 39.8

1 49 25.7

2 19 9.9

�3 44 23

Missing data 3 1.6

Number of Children in Family

1 62 32.5

2–3 103 53.9

�4 25 13.1

Missing data 1 0.5

Chronic vs. Acute Illness

Chronic 82 43

Acute 107 56

Missing data 2 1

Planned vs. Emergency Admission

Planned 61 32

Emergency 129 67.5

Missing data 1 0.5

Diagnosis

Investigation of Symptoms 34 17.8

Gastrointestinal 28 14.7

Neurological 23 12

Respiratory 19 10

Musculoskeletal 16 8.4

Genitourinary 14 7.3

Cancer 10 5.2

(continued )


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in age from 1 week to 12 years, with a mean of 3 years and 8 months.More children (56%) were admitted for treatment of an acute illnessthan chronic illness (43%) and about two-thirds (67.5%) were admittedvia the emergency department. Over half of the children had beenadmitted to hospital at least once in the past. Of the children admittedwith acute illness, 19.7% had been hospitalized twice or more in thepast, while 50% of the children with chronic illness had experiencedtwo or more previous hospitalizations (Table 3).

Describing Congruency: Comparing Actual and DesiredLevels of Participation

Data analysis using a paired samples t test revealed a significantdifference between participants’ actual and desired levels of participation(t =�9.382, df = 190, p50.0001). The mean on the IPP Actual scalewas 22.3 (SD = 7.6) while the mean on the IPP Desired scale was27.1 (SD = 7.3). A higher score indicates a higher level of actual/desired

Table 2. Continued

Variable n %

Head & Neck 9 4.7

Injury 9 4.7

Miscellaneous Infection 8 4.2

Other 7 3.7

Cardiac 6 3.1

Skin 3 1.6

Procedure 3 1.6

Endocrine 2 1

Table 3. Number of hospitalizations: Comparison of children with chronicvs. acute illness (N = 189)a

Children with Chronic

Illness (n = 82)

Children with Acute

Illness (n = 107)

Number of Hospitalizations n % n %

0 23 28 52 48.6

1 17 20.7 32 29.9

2 14 17.1 5 4.7

�3 27 32.9 16 15

Missing data 1 1.2 2 1.9

aInformation regarding type of illness (acute or chronic) not available for two participants


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participation. A significant difference between Actual and Desiredparticipation also was evident within the demographic characteristicsexamined. There was no significant difference in Actual participationscores and Desired participation scores between groups for the followingcharacteristics: type of illness, child’s gender, child’s age, parent levelof education, child’s history of hospitalization, and type of admission.However, examination of parent employment status indicated that Actualparticipation was significantly higher for parents employed part-timecompared to unemployed parents (Table 4).

Congruency scores, defined as the IPP/HC Actual score minusIPP/HC Desired score ranged from �30 to 22, with a mean of �4.8(SD = 7.1). A positive congruency score indicated that the parent’sactual participation was greater than his/her desired participation, whilea negative congruency score indicated that the parent’s actual partici-pation was less than his/her desired participation. The majority ofparticipants (74.9%) had a negative congruency score, while 15.2% hada positive score. Nineteen participants (9.9%) received a neutralcongruency score, in which their score on the IPP Actual equaled thaton the IPP Desired, although not necessarily the same items wereselected on the Actual and Desired forms.

Describing Congruency: Parents’ Care Activities

The above mentioned results together with data from the writtencomments provide a picture of the nature of parental participation in thisstudy. The high value placed on presence and providing comfort wasevident when one parent included as an additional Actual activity ‘‘themost important activity of all, loving and keeping my child happy.’’ Inkeeping with this parental role, the items most often selected on theActual scale included ‘‘Spent quiet time interacting with child’’ (92.1%)and ‘‘Comforted child when upset (not related to a painful procedure)’’(90.1%). These activities also were most often reported as Desiredactivities, with scores of 95.8% and 94.8% respectively. While partici-pants also expressed a Desire to ‘‘Comfort child during painfulprocedure’’ (89%), only 69.6% of parents actually did so.

Four activities of daily living (ADL) were rated highly on both theActual and Desired scales respectively: ‘‘Helped with elimination’’(90.1% and 92.1%); ‘‘Settled for sleep or nap’’ (87.4% and 91.6%); ‘‘Fedchild or set up his food tray’’ (86.9% and 88.5%); and ‘‘Changed clothesor pajamas’’ (85.3% and 92.1%). Less frequently performed were‘‘Bathed child/sponged with washcloth’’ (62.3% and 81.7%) and‘‘Brushed teeth/performed mouth care’’ (43.5% and 66.5%).Approximately one-quarter of the participants reported a desire to


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Table 4. Actual and desired participation by demographic characteristics

Characteristic N Mean SD p Value

Type of Illness

Actual Participation

Chronic 82 22.2 7.2 0.80

Acute 107 22.5 7.9

Desired Participation

Chronic 82 26.8 7.0 0.63

Acute 107 27.3 7.6

Chronic Illness*

Actual 82 22.2 7.2 50.001

Desired 82 26.8 7.0

Acute Illness*

Actual 107 22.5 7.9 50.001

Desired 107 27.3 7.6

Parent Employment Status

Actual Participation*

Full-time 64 22.7 7.7 0.02

xPart-time significantly

different from unemployed group.

Part-time 24 26.2 7.4

Unemployed 102 21.2 7.4


Full-time 64 26.6 7.9 0.39

Part-time 24 29.0 4.6

Unemployed 102 27.0 7.5

Full-time*

Actual 64 22.7 7.7 50.001

Desired 64 26.6 7.9

Part-time*

Actual 24 26.2 7.4 0.05

Desired 24 29.0 4.6

Unemployed *

Actual 102 21.2 7.4 50.001

Desired 102 27.0 7.5

Child’s Gender


Female 82 22.3 7.7 0.94

Male 107 22.4 7.7


Female 82 26.7 8.1 0.42

Male 107 27.6 6.6

Female*

Actual 82 22.3 7.7 50.001

Desired 82 26.7 8.1

Male*

Actual 107 22.4 7.7 50.001

(continued )


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Table 4. Continued


Desired 107 27.6 6.6

Child’s Age


536 months 102 21.4 8.0 0.16

36–71 months 37 24.1 6.1

72+ months 51 22.8 7.7


536 months 102 26.3 7.4 0.17

36–71 months 37 28.8 6.0

72+ months 51 27.7 8.0

536 months*

Actual 102 21.4 8.0 50.001

Desired 102 26.3 7.4

36–71 months*

Actual 37 24.1 6.1 50.001

Desired 37 28.8 6.0

72+ months*

Actual 51 22.8 7.7 50.001

Desired 51 27.7 8.0

Parent Level of Education


High school/less 77 21.4 8.4 0.30

College/university 84 22.7 7.4

Graduate degree 29 23.7 5.8


High school/less 77 26.4 8.1 0.27

College/university 84 27.1 7.4

Graduate degree 29 29.0 4.3

High school/less*

Actual 77 21.4 8.4 50.001

Desired 77 26.4 8.1

College/university*

Actual 84 22.7 7.4 50.001

Desired 84 27.1 7.4

Graduate degree*

Actual 29 23.7 5.8 50.001

Desired 29 29.0 4.3

Child’s History of Hospitalization


No previous 76 21.9 7.6 0.69

One previous 49 22.8 6.4

41 previous 63 22.9 8.3


No previous 76 26.1 7.7 0.07

One previous 49 26.5 8.1

(continued )


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provide a bath or mouth care but did not do so. Written commentsindicated that parents also made beds and participated in morecomplicated ADL activities such as administering tube feedings orproviding a special bath.

Parents who wanted to help the nurse give their child’s medicationbut did not do so outnumbered those who did help with medicationadministration but did not indicate it as a Desired activity (15.7% and3.7% respectively); 59.7% of parents wanted to help give medicationsand did so. Parents’ technical care activities reflected through writtencomments included gastrointestinal tube site care and tracheotomy care.Two participants indicated their desire to learn some aspects of caringfor their child’s intravenous infusion.

Parents’ responses suggest a desire to advocate for their child thatwas not always fulfilled. Examination of Actual scale scores indicatedthat while 87.4% of participants reported that they ‘‘Told nurse aboutsomething your child needed’’, the following scale items suggest that

Table 4. Continued


41 previous 63 28.9 6.0

No previous*

Actual 76 21.9 7.6 50.001

Desired 76 26.1 7.7

One previous*

Actual 49 22.8 6.4 50.001

Desired 49 26.5 8.1

41 previous*

Actual 63 22.9 8.3 50.001

Desired 63 28.9 6.0

Type of Admission


Planned 61 21.6 7.9 0.29

Emergency 129 22.8 7.3


Planned 61 27.0 6.4 0.69

Emergency 129 27.4 7.4

Planned*

Actual 61 21.6 7.9 50.001

Desired 61 27.0 6.4

Emergency*

Actual 129 22.8 7.3 50.001

Desired 129 27.4 7.4

* = significant differencex= HSD Tukey test used to determine significant difference between participants employed

part-time and those not employed.


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they were less likely to communicate regarding ways to individualizetheir child’s care: ‘‘Told nurse about child’s routines, likes and dislikeswithout being asked to do so’’ (42.4%) and ‘‘Suggested to nurse ordoctor a different way or time of doing something that you thoughtwould be better for your child’’ (40.8%). These were among the itemsmost frequently reported as Desired but not actually done (29.8% and27.2% respectively).

DISCUSSION

The results of the current study support the hypothesis that there is adifference between parents’ actual participation and their desiredparticipation, with the majority of parents reporting a desired partici-pation higher than their actual participation. This difference is notaffected by demographic variables including type of illness (acute orchronic), parent employment status, child’s gender, child’s age, parentlevel of education, child’s history of hospitalization and type ofadmission. Examination of parent employment status indicated thatparents who were employed part-time reported significantly higherlevels of Actual participation than did parents who were not employed.This unexpected finding could be related to differences in parentalobligations to other family members. For example, a parent who is notemployed but has responsibility for other children at home may haveto limit their participation in their hospitalized child’s care. Examinationof combinations of variables in relation to Actual and Desiredparticipation was beyond the scope of the current study.

The majority of participants (74.9%) had negative congruency scores,indicating that their desired participation was higher than their actualparticipation. The desire to increase involvement in care has beenreported previously. Kristensson-Halstrom & Elander (1997) reportedthat parents wanted to take on more care responsibilities but werenot able to do so because they did not receive the support and guidancefrom the nurses that they required. Balling & McCubbin (2001)examined parents’ desire for control over their child’s care, using ascale that took into consideration parents’ participation in physicalcare activities. They found that parents of younger children wantedmore control over their child’s care. This need for control in parentsof younger children may be reflected in the current study, as three-quarters of all participants had negative congruency scores and 53.4% ofall participants had children younger than 3 years of age.

Parents whose congruency scores were positive, indicating that theiractual participation was greater than their desired participation, made up15.2% of the sample. In earlier studies, parents have reported providing


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more care than they desired due to their perception that it was expectedof them by the nursing staff (Coyne & Cowley, 2007; Espezel & Canam,2003; Roden, 2005; Ygge & Arnetz, 2004). Espezel & Canam (2003),and Coyne & Cowley (2007), identified that such experiences weredifficult for parents. Coyne and Cowley stated that parents participatedin care even when they would have preferred not to for two reasons:parents wanted to ensure that their child’s care needs were not neglected,and they believed that doing so would contribute to a good relationshipwith the nurse, which in turn would help to ensure good care for theirchild. In the current study, a parent’s written comments reflect the fearof neglect: ‘‘[I] stayed all night and all day for feeling that if I don’t staymy child would not get all these tasks performed. . .’’.

Neutral congruency scores, where the number of items checked on theActual scale equaled the number of items checked on the Desired scale,accounted for 9.9% of the sample. While a neutral score indicates thatthe same number of items was checked on each scale, it does not meanthat identical items were checked on both scales. Examination of theseneutral scores indicated that while 11 participants selected identicalitems on both scales, 8 had differences on between 2 and 10 items. Thus,while a neutral score indicates balance between the number of Actualand Desired activities, it also includes parents who may have wanted toparticipate in activities that they did not actually do, and vice versa.

The types of activities parents in this study participated in reflectfindings of earlier research. The importance of providing comfort to thechild has been reported previously (Aein et al., 2009; Coyne, 1995;Coyne & Cowley, 2007; Kristensson-Hallstrom & Elander, 1994; Roden,2005; Romaniuk & Kristjanson, 1995). While 89.0% of parentsexpressed a desire to provide comfort to their child during a painfulprocedure, only 69.9% reported doing so. Similar discrepancies alsohave been reported in previous studies, which reported that parents maynot be asked about preferences for participation in their child’s painfulprocedure (Lam et al., 2006; Sanjari et al., 2009; Ygge & Arnetz, 2004)It is important that nurses identify parents’ preferences regardingparticipation in painful procedures and support parents to make thesepreferences a reality.

Parents in the current study were active participants in care relatedto their child’s ADL, supporting the results of previous studieswhich identified parents’ active participation in their children’s ADLcare (Balling, & McCubbin, 2001; Coyne & Cowley, 2007; Kristensson-Hallstrom & Elander, 1994). This study found that parents often wantedto provide their child with a bath or mouth care but did not do so.Previous studies have identified bathing as an activity that parents mayneed assistance with, especially in the presence of intravenous (IV)


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infusions (Algren, 1985; Lam et al., 2006). Both bathing and mouth carerequire supplies that may not be readily available to parents in the unit.In addition, admission to hospital may upset families’ usual routines forthese activities. Parents may be reluctant to approach staff for assistancewith care, thus it can be helpful for staff to offer supplies and/orassistance as well as provide support in establishing new routines forbathing and oral hygiene.

In the current study, 75.4% of parents desired to assist with medicationadministration while 63.4% actually did so. This rate is comparable toprevious research reporting that 60% of parents felt they could giveoral medications (Algren, 1985). Via written comments at the end of thequestionnaire some participants identified that they provided gastro-intestinal tube site care, tracheotomy care, and suctioning (unspecified).Previous literature states that parents are more likely to participate intechnical care activities that they also carry out at home (Coyne, 1995;Coyne & Cowley, 2007), and the three activities listed above may reflectthat reality.

Previous research indicates that parents consider being a mediatorbetween their child and hospital staff an important part of their rolein hospital (Coyne & Cowley, 2007; Kristensson-Hallstrom & Elander,1997; Lam et al., 2006). This is supported by the current study’sfinding that 87.4% of participants communicated with the nurseregarding their child’s needs. However, parents were less likely tosuggest ways to individualize their child’s care. This differencemay reflect previous study findings which identified that someparents may be hesitant to disturb nurses with questions or comments(Coyne & Cowley, 2007; Kristensson-Hallstrom & Elander, 1997;Ygge & Arnetz, 2004). The measurement of a difference betweenactual and desired participation indicates that there may be a need forgreater dialogue between parents and nurses about participation in careactivities.

While the current study was not designed to determine the reasonsfor differences in Actual and Desired participation, earlier researchdoes provide some information regarding factors that may influenceparent participation. Further research comparing congruency scores tomeasurement of influencing factors may provide knowledge that canenhance nurses’ ability to facilitate parents’ desired participation.

Study Limitations and Strengths

Study limitations include the use of convenience sampling to recruitparticipants; the large proportion of mothers responding to thequestionnaire limits generalizability to other caregivers; the potential


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for social desirability response bias if participants believed that ‘‘good’’parents should participate in their child’s care and should want to do so;parents’ desired participation may reflect an ideal that is not feasibleunder the circumstances; and data regarding parents’ opportunities toparticipate in specific care activities were not collected.

An important strength of this study is the use of the IPP/HC tomeasure parental participation, as this tool has established reliabilityand validity, and it includes a wide variety of activities related to the careof hospitalized children. A further strength is the heterogeneity of thesample and its size. Using power analysis, the required sample size forthis research was 199 participants. The final sample was 191. While thissample is slightly smaller than projected, it was sufficient to prevent aType II error, as the difference between actual and desired participationwas statistically significant (Polit & Beck, 2004).

Implications

The findings of the current study serve as an important reminder topediatric nurses that parent participation is a dynamic concept,manifested differently by different parents. Pediatric nurses can supportparent participation by being mindful of the high priority parents placeon comforting their child; ensuring that parents are not inadvertentlyplaced in situations where they feel pressured to provide more care thanthey are comfortable with or less care than they would like to and couldsafely provide; being responsive to parental needs for support andencouragement in certain situations (e.g., bathing, supporting theirchild during a painful procedure); and cultivating a non-judgmentalatmosphere in which parents feel comfortable expressing their sugges-tions for their child’s care

Knowledge of the effects of family-centered care, and parentparticipation in particular, on children and families is sparse (Harrison,2010; Power & Franck, 2008; Shields et al., 2012), as is knowledge offactors that influence successful implementation of family-centered care.Previous authors have acknowledged the need for quantitative researchto develop this knowledge base (Coyne & Cowley, 2007; Coyne et al.,2011; Shields et al., 2012). Further research involving congruency maycontribute to filling these gaps. Next steps in the study of congruencyinclude refining this concept and its measurement, examining congru-ency in relation to types of care activities, and linking it withcircumstances on the nursing unit that may affect parent participation,such as staffing patterns and patient acuity (McKiel, 2002). Certaingroups, such as fathers, parents of adolescents, and parents of childrenwith psychiatric diagnoses, have been neglected within the parent


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participation literature, and research examining these groups in greaterdepth is needed.

CONCLUSION

This study identified a significant difference between parents’Actual andDesired participation in their hospitalized children’s care, with themajority of parents wanting to increase their involvement in careactivities. This difference was not affected by demographic variables.Parents were most active in providing comfort measures and care relatedto activities of daily living and indicated a desire to increase theirparticipation in activities related to advocating for their child. Pediatricnurses need to be aware of parents’ varied preferences for participationand provide support for participation accordingly. Areas for futureresearch include refining the concept of congruency and its measurementas well as further examination of variables that might be associated withcongruency.

DECLARATION OF INTEREST

The authors report no conflict of interest. The authors alone areresponsible for the content and writing of the paper.

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Documents

Are parents doing what they want to do? Congruency between parents’ actual and desired participation in the care of their hospitalized child