Parent Satisfaction in the Pediatric ICU

Jos M. Latour, RN, MSNa,*,Johannes B. van Goudoever, MD, PhDb,

Jan A. Hazelzet, MD, PhD, FCCMc

aDepartment of Pediatrics, Division of Pediatric Intensive Care, Erasmus MC – Sophia

Children’s Hospital, Sp 1539, P.O. Box 2060, 3000 CB Rotterdam, The NetherlandsbDepartment of Pediatrics, Division of Neonatology, Erasmus MC – Sophia Children’s

Hospital, Sp-3432, P.O. Box 2060, 3000 CB Rotterdam, The NetherlandscDepartment of Pediatrics, Division of Pediatric Intensive Care, Erasmus MC – Sophia

Children’s Hospital, Sk-3228, P.O. Box 2060, 3000 CB Rotterdam, The Netherlands

Various strategies and models have been developed to improve thequality of health care. Initiatives such as evidence-based medicine andevidence-based nursing [1,2], quality improvement circles [3], and clinicalperformance indicators [4] have been found valuable. Less attention hasbeen given to the empowerment of patients and families as a means ofincreasing health care standards based on their needs.

Despite the efforts to improve quality in health care, the American Insti-tute of Medicine (IOM) identified six areas in today’s health care system thatstill are below standard: safety, effectiveness, timeliness, patient centered-ness, efficiency, and equity [5]. A major challenge for health care workersis putting patients in the center of care, giving them autonomy, and accept-ing them as partners in care. Professionals therefore need to find methods toempower patients. In pediatric intensive care most children may be unableto express their needs and experiences. Here the experiences of parents arerecognized as being fundamental for the definition of quality [6]. In this per-spective the principles of family-centered care mandate incorporation ofparents in daily care. Subsequently, measures of parent satisfaction becomea valuable tool in establishing a family-centered and parent-driven caremodel that would benefit quality of care.

Satisfaction surveys are suggested to be relevant for patient-driven caremodels [7]. Although patient satisfaction is studied widely in various medicalservices, most surveys take a medical or nursing perspective rather than

Pediatr Clin N Am 55 (2008) 779–790

* Corresponding author.

E-mail address: j.latour@erasmusmc.nl (J.M. Latour).

0031-3955/08/$ - see front matter � 2008 Elsevier Inc. All rights reserved.

doi:10.1016/j.pcl.2008.02.013 pediatric.theclinics.com

780 LATOUR et al

focusing on the patients’ needs and experiences. Thus, parental input indeveloping a comprehensive pediatric ICU (PICU) satisfaction survey isindispensable [8]. Action for rigorous assessment of parent’s needs and experi-ences of the perceived care and consequently the integration of their views insatisfaction surveys is warranted. So far, only a few studies have demonstratedthis method [9,10]. This article analyzes and discusses a parental satisfactionframework for action toward quality improvement in pediatric intensive careby parental empowerment through the use of parent satisfaction measures.

Method

The authors performed a PubMed literature search focusing on threethemes: parent satisfaction; parental needs and experiences; and family-centered care. For parent satisfaction and family-centered care a time limitwas set between January 1990 and June 2007. No time limit was used forparental needs, because the authors were aware of some relevant referencespublished before 1990. Search terms for parent satisfaction and parentalneeds were ‘‘parent(s),’’ ‘‘satisfaction,’’ ‘‘pediatric,’’ ‘‘intensive care,’’‘‘needs,’’ and ‘‘experience(s)’’. Search terms for family-centered care were‘‘respect,’’ ‘‘information,’’ ‘‘education,’’ ‘‘coordination of care,’’ ‘‘physical,’’‘‘emotional,’’ ‘‘involvement,’’ ‘‘parents,’’ and ‘‘family-centered care.’’ Be-sides these terms, all searches included the term ‘‘quality.’’ References ofthe identified articles were screened to account for omissions in the elec-tronic search. The literature on family-centered care provided particularlyextensive references. For the purpose of this article, only key references sup-porting the rationale of the framework are used.

Family-centered care

The principles of family-centered care in the PICU should be grounded incollaborative relationships between health care professionals and parents.Six domains have been identified in the literature [5,11,12]:

� Respect� Information and education� Coordination of care� Physical support� Emotional support� Involvement of parents

These domains relate to the roles of the professionals and the parents.Although the principles of family-centered care are well known by healthcare professionals, current practice seems not to be consistent with theseconcepts [13,14]. Evidence demonstrates that health care professionals findit difficult to build up a relationship with the family or parents and to

781PARENT SATISFACTION IN THE PEDIATRIC ICU

meet their needs [15]. PICU physicians and nurses need to develop interven-tions to improve family-centered care [16].

Respect

The global attention to equity in health care for all children and parentshas increased awareness of the need to safeguard the outcome of critically illchildren and the well being of the parents unrelated to their background.Inconsistencies in the unequivocal approach to children and parents arerelated to discrimination in health care access and treatment based on per-sonal characteristics [4,17]. A recent study in the United States provides datathat children from ethnic minorities experience significant difficulties inaccessing health care compared with white children [18]. National insurancepolicies often are to blame for this discrepancy. In Europe, the health caresystems provide access to medical treatments for all children. Health careprofessionals, however, need to be aware of the needs and preferences ofeach individual child and its parents, regardless of their ethnic backgroundand beliefs [19,20]. Respect and understanding must come from knowledgeof different cultural and religious perspectives.

Information and education

Providing information and education to parents is a major challenge forprofessionals. It is within the realm of information where professionals andparents come together and collaborate in the care of the critically ill child.Effective and understandable communication between parents and profes-sionals benefits the child, decreases parental stress and anxiety levels, andis the basis for trust [21,22]. Increasing attention is paid to interventionsaimed at improving communication. Most intervention studies, however,originate from neonatology, general pediatrics, and anesthesiology; contri-butions from pediatric intensive care still are scarce.

Coordination of care

PICUs by nature are mostly transitional units. The critically ill child usu-ally is admitted from an emergency department or a pediatric ward.Dischargeoften is planned to a pediatric ward. Transfers must be coordinated carefullybetween services. Transitional care, however, also encompasses other aspects,such as consultations, procedures, tests, and basic daily care. For parents,these processes become clear only when communication by the professionalsis timely and accurate. Documented effective interventions to improve admis-sion or discharge planning in PICU settings are limited [23].

Physical support

By nature, parents are concerned about their child’s pain and comfort. Thechild’s pain and discomfort may influence parental stress. In a multicenter

782 LATOUR et al

study, parents reported that their infants had experienced more pain thanthey had expected; they also worried about the long-term effects of pain[24]. These worries were predictors of increased parental stress levels. Al-though validated pain and comfort assessment instruments are available inthe PICU [25,26], professionals may not always be willing to use these instru-ments in daily practice. Improving the attitude of the health care profes-sionals might benefit the recovery of the critically ill child and enhanceparental well being.

Emotional support

Symptoms of traumatic stress are common among parents of PICU pa-tients and may persist long after discharge [27]. The pioneering work ofCarter and Miles [28], who developed and tested the Parental Stressor Scale:PICU, has contributed much to the identification of parental stress and cop-ing strategies. The instrument was designed to measure the overall parentalstress response during the admission of their child in the PICU. The 37 itemswere grouped in seven dimensions (Box 1). Despite many studies examiningparental stress, effective interventions to reduce stress are limited in scope.In a randomized, controlled trial, the Creating Opportunities for ParentEmpowerment (COPE) program, an educational-behavioral intervention,was tested on its positive effects on coping up to 12 months after hospital

Box 1. Dimensions of the Parental Stressor Scale: pediatric ICU

Child’s appearanceDescriptions of the child’s appearance (three items)Sights and soundsAlarms of equipment and surroundings near the child (three

items)ProceduresTests and procedures that may have been done (six items)Staff behaviorBehavior of physicians and nurses as experienced by parents

(four items)Alterations in parental roleParents’ perception of being unable to care for the child (six

items)Staff communicationHow physicians and nurses communicate with the parents (five

items)Child’s behavior and emotionsBehavioral and emotional responses of the child (10 items)

783PARENT SATISFACTION IN THE PEDIATRIC ICU

discharge [29]. The 87 mothers in the COPE group reported significantly lessstress after the child was transferred from the PICU to the pediatric wardthan the 76 mothers in the control group. Symptoms of depression alsowere significantly fewer in the COPE group 1 and 6 months after discharge.After 12 months the mothers in the COPE group reported significantly fewerposttraumatic stress disorders. These findings suggest that parenting pro-grams may be valuable in long-term improvement of children’s and parents’mental health after PICU admission. A systematic review of 26 parentingprograms in pediatrics provides data covering mainly short-term effects[30]. Most programs are effective and seem to contribute significantly tothe psychosocial health of the mothers.

Involvement of parents

PICUs provide open visiting hours, participation in care, parental pres-ence during invasive procedures, and involvement in (critical) decision mak-ing, and some units even allow parental presence during medical rounds.The focus is on reaching partnership between PICU professionals and par-ents. The current multicultural changes in societies require health care pro-fessionals to be aware of the cultural diversity of the functioning family [16].

Despite the general agreement on the dimensions of family-centered care,evidence suggests that nurses may find it difficult to build up a relationshipwith parents and to meet their needs [31]. Physicians also need to invest inproviding support to parents. As suggested by Azoulay and Sprung [32], as-sessment of intervention outcomes in family members would elucidate theextent to which family-centered care matches family expectations.

Family-centered care in thePICUsetting is not a newconcept, but there stillis room for improvement. Knowledge of parental needs and perceived care isessential to achieve improvement. Parent satisfaction surveys that includea core set of items related to the dimensions of family-centered care eventuallymight provide interventions to improve family-centered care.

Parental needs and experiences

Pediatric intensive care staff should take a leading role by changing theirattitudes, gaining in-depth understanding of parents’ experiences, and actingon the parental needs. Parental needs in the PICU setting have been studiedby various methods. The quantitative studies on this subject [33–36] usedmodified versions of the 45-item Critical Care Family Needs Inventory,originating from the adult intensive care setting [37]. The rankings of top20 needs do not differ extensively among these studies (Table 1). Althoughthe intensive care settings focus predominately on the critically ill child’shealth status, the interpersonal interactions should be taken into accountto meet the needs and preferences of both the child and parents. Thesestudies have a few possible limitations. First, they generally leave out

Table 1

Ranking top 20 needs of parents in pediatric intensive care

Need

Rankinga

Kirschbaum [35]

41 parents

Farrell and

Frost [33]

27 parents

Fisher [34]

15 mothers

15 fathers

Scott [36]

21 mothers

Knowing how child is

treated medically

1 3 4 1

Feeling there is hope 1 6 2 n.m.

Assured the best possible

care is given

1 5 6 1

Knowing specific facts

concerning progress

2 n.m. 4 n.m.

Having questions answered

honestly

2 1 4 1

Knowing exactly what is

being done

2 n.m. 5 n.m.

Being called at home about

changes

3 1 5 1

Feeling the personnel care

about my infant

3 n.m. 5 1

Knowing the prognosis/

outcome

4 2 1 1

Receive information

once a day

4 n.m. 5 2

Knowing what is wrong

with the child

n.m. 1 n.m. n.m.

Understandable explanations 7 3 n.m. n.m.

Talking with the doctor 9 4 6 n.m.

Talking with the nurse 20 5 n.m. n.m.

Have a nurse with me

at the bedside

n.m. 5 n.m. n.m.

Knowing why things were

done for the child

5 n.m. 2 n.m.

Knowing the child is being

treated for pain and/or is

comfortable

n.m. n.m. 2 n.m.

Knowing the child may still be

able to hear me if she/he

is not awake

n.m. n.m. 3 n.m.

Seeing the child frequently 6 n.m. 4 1

To visit at any time 8 n.m. n.m. 1

Abbreviation: n.m, not mentioned.a Ranking numbers can appear more than once because they have the same values in the

results (mean or percentages).

784 LATOUR et al

multicultural issues and differences among the parents. These omissionscould affect the identification of issues important for individual parent-centered care. Second, these studies date from the 1990s. Parental needsand preferences might have changed since then. Items related to the

785PARENT SATISFACTION IN THE PEDIATRIC ICU

provision of information have ranked high over the years, however (seeTable 1). Finally, Noyes [38] raised methodologic issues regarding the valid-ity of the instruments, sample sizes, and the defined variables. It wassuggested that the questionnaires used were inadequate to explore the par-ents’ experiences. Indeed, although needs and experiences are two relatedconcepts, different strategies should be used to explore each of them.

Several studies focused on parents’ experiences during admission. Arecent study interviewed 20 parents whose children had been hospitalized,either in the PICU (n ¼ 11) or in the pediatric ward (n ¼ 9) [39]. Experiencesexplored regarded illness onset, actual admission, stay, and the dischargeprocess. In the PICU group, parents were less reassured at admission be-cause of the child’s severity of illness and the start of medical interventions.Interaction with the medical team during the PICU stay was a barrier forsome parents and could turn into a source of stress and anxiety. Minor fail-ings in the PICU discharge process generated a greater anxiety in the par-ents, although parents generally were satisfied with the aftercare by thepediatric outpatient departments. Similar findings were found in a studyamong fathers who had a child in the PICU (n ¼ 15) and in a general pedi-atric ward (n ¼ 10) using two stressor scales to identify specific sources ofstress and stress symptoms [40]. Fathers whose children were in the PICUreported the technical procedures on the child and the parental role asmost stressful to them. Surprisingly, professional staff communication wasexperienced as less stressful. These findings differ from the previous study[39], showing that parents who had children in the PICU were less contentwith the provision of information during admission and at discharge. Thesecontrasting findings might result from differences in PICU environment andstaff. Therefore, every PICU should assess carefully its own professionalapproaches toward parental guidance.

Combining the findings from the parental needs studies with those of theparental experiences studies may instill a fundamental understanding ofmeans to ensure the empowerment of parents in critical care settings. Parentsatisfaction measures based on both the needs and experiences of parentscould provide comprehensive results that eventually might steer the profes-sionals toward family-centered care improvement.

Framework for action

The PICU is a complex setting, particularly for the child and parents.Professionals involved in PICU probably do their utmost to provide thechild and parents a safe passage through this critical period. Whether theseefforts are well received by the parents usually is not documented. It is notknown whether many PICUs measure parental satisfaction. So far, only twosatisfaction studies have documented how parents perceive PICU care[9,10]. Both studies developed a parent satisfaction questionnaire based onliterature reviews, parent consultation, and multidisciplinary input. Despite

786 LATOUR et al

this rigorous instrument development, a gap remains between a frameworkand assumptions on the research topic. Furthermore, Haines and Childs [10]found the tool developed by McPherson and colleagues [9] insufficient incovering all areas of their PICU service. They therefore developed theirown instrument for local use. Based on the results of the satisfaction surveyof 110 families, Haines and Childs were able to identify strategies to opti-mize the service (Box 2).

Patient centeredness in particular focuses on the patient’s experience andperceived care. The uniqueness of the PICU, with parents serving as proxiesfor their critically ill child, necessitates a clear distinction between the con-cepts of patient centeredness and family-centered care. The domains of fam-ily-centered care, as described previously, have in common the IOM goals oftime, equity, effectiveness, efficiency, and safety. The synergy of these aimswithin family-centered care provides this concept with a comprehensivebasis for health care improvement.

Family-centered care, parental needs, and parental experiences seem tobe the core concepts that reflect the nature of multidisciplinary care for par-ents in the PICU. Extensive work on various care aspects of family-centeredcare has been done. A recent review identified 43 evidence-based guidelinesto support family members in critical care [41]. Because satisfaction usually

Box 2. Identified strategies to improve practice by Hainesand Childs

� Review timing and opportunities of preadmission visits� Standardize planned PICU admissions� Provide assistance for novice PICU nursing staff in bedside

support of parents� Improve communication with parents about unit routines and

closure practices� Improve availability of written communication� Optimize the role of senior nurses in providing verbal

information for parents� Clarify communication channels when multiple medical teams

are involved� Optimize continuity in nursing allocations� Improve the preparation of parents for the transition from PICU

to wards� Improve teamwork and communication during the discharge

process

Data from Haines C, Childs H. Parental satisfaction with paediatric intensivecare. Paediatr Nurs 2005;17(7):37–41.

Respect

Informationand

Education

Coordinationof

Care

PhysicalSupport

Involvementof

Parents

EmotionalSupport

Parental Experiences

Parental Needs

PARENTSATISFACTION

Fig. 1. Framework for parent satisfaction in pediatric intensive care.

787PARENT SATISFACTION IN THE PEDIATRIC ICU

was not an outcome variable, the question remains whether these guidelineswill be well received by the parents.

The framework shown in the Fig. 1 puts parent satisfaction in the centerline, because this concept can include measurable items. Parental needs andexperiences are placed in the middle ring, impacting both the outer ring’s sixdomains of family-centered care and the inner circle’s parent satisfactionoutcomes. During and after a PICU admission, parents build up a certaindegree of understanding of the complexity of intensive care. This frameworkreflects the underlying philosophy of taking the parent’s preferences intoaccount. The satisfaction framework provides action toward research thatcrosses borders between professionals and parents and works toward part-nership in pediatric intensive care. Eventually, the results of satisfactionstudies need to trigger professionals to develop and test new interventionsto meet the needs and preferences of the parents in the PICU.

Summary

The IOM’s six aims to improve health care in the twenty-first centuryprovide a useful framework for pediatric intensive care professionals. It isparticularly the aim of patient centeredness that encompasses quality ofcompassion, empathy, and responsiveness to the needs, values, and ex-pressed preferences of the individual patient. For the pediatric intensivecare setting this concept can be translated into family-centered care because

788 LATOUR et al

the parents and the critically ill child constitute one family unit with theright to the best possible care in relation to the best possible outcome forthe child and parents.

Incorporating the concept of family-centered care, parental needs,experiences, and parent satisfaction surveys into the development of a parentsatisfaction instrument may achieve a fundamental improvement in qualityof care based on the empowerment of parents. Parent satisfaction survey canbecome quality performance indicators and may facilitate the evaluation ofquality initiatives.

� The principles of family-centered care are well known but are notconsistently implemented into practice.� Parent satisfaction outcomes are not widely accepted as quality perfor-mance indicators.� Empowerment of parents in the development of parent satisfactioninstruments can provide accepted quality performance indicators.� Measuring parent satisfaction requires involvement and participationof parents as well as partnership between parents and health careprofessionals.

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