Journal of Pediatric Nursing (2012) 27, 514–522

Integrative Review: Parent Perspectives on Care of TheirChild at the End of LifeAnn P. Aschenbrenner MSN, RN a,⁎, Jill M. Winters PhD, RN a,Ruth Ann Belknap PhD, RN, PMHCNS-BC b

aColumbia College of Nursing, Glendale, WIbCollege of Nursing, Marquette University, Milwaukee, WI

0d

Key words:End of life;Children;Parents

This integrative review aims to describe parents' perspectives on end-of-life care for their children.Fifteen publications from a literature search of the Cochrane databases, CINAHL, MEDLINE, andPSYCHinfo were included in the review. Recurring themes included poor communication/lack ofinformation, strained relationships/inadequate emotional support, parental need to maintain parent/childrelationships in life and death, quality of care continues after the death of the child, influence of services/planning on parent/child impacts quality of life, and the difficult decision to terminate life support. Nostudies were identified that focused on parents' perspectives on the care their child received at the end oflife. Further research that focuses on the special needs of parents at this difficult time is needed.© 2012 Elsevier Inc. All rights reserved.

PARENTS OF CHILDREN at the end of life need tomake difficult decisions about end-of-life care. Parental end-of-life decision making includes a parent's decision towithhold resuscitation efforts or withdraw life-sustainingtherapy to allow the terminally ill child to die a natural death(Rishel, 2010). Parents need information, resources, andsupport to make these difficult decisions. Children are aparticularly vulnerable population, especially at the end oflife (Jacobs, 2005), and they should play an active role in thedecision-making process whenever possible. Parents havethe responsibility to provide informed permission formedical care when the child is unable to contribute to thedecision-making process (American Academy of Pediatrics,1995). The first step in this process may be the decision totransition from curative to palliative care.

Palliative care is centered on improving the quality oflife of patients and their families when faced with life-threatening illness, focusing on prevention and relief ofsuffering through early identification and careful assessment

⁎ Corresponding author: Ann P. Aschenbrenner, MSN, RN.E-mail address: aaschen1@ccon.edu (A.P. Aschenbrenner).

882-5963/$ – see front matter © 2012 Elsevier Inc. All rights reserved.oi:10.1016/j.pedn.2011.07.008

and treatment of pain, as well as physical, psychosocial, andspiritual needs (World Health Organization, 2010). Thesetting can be in the home or the hospital, and approachesshould be based on parental wishes (Longden & Mayer,2007). Grief can be prolonged when death is sudden(Seecharan, Andresen, Norris, & Toce, 2004). This findinglends support for further investigation into parents' experi-ences with end of life.

Watson's (1979, 1999, 2005) theory of caring providessupport for the importance of this integrative review.Dimensions of caring reflect deep transpersonal involvementand caring as part of caring science (Watson, 1979, 2005),and they capture the human dimension of nursing, includingthe personal experiences of the recipient and provider ofcare. Caring as art, a moral ideal, is the starting point thatleads to commitment and judgment, resulting in concreteactions (Watson, 1999, 2005). The goals of caring, mentaland spiritual growth, finding meaning in self and others,discovering inner power and control, and promotingtranscendence and self-healing (Watson, 1999, 2005), maybe vital to parents of dying children. These caring momentsassume that the nurse has adequate knowledge and clinicalcompetence, and they depend on the nurse's ability to assess

515Parent Perspectives EOL

and understand the patient's condition and attend to it usingappropriate means (Watson, 1999).

Nurses are uniquely situated to provide support to thepatient and the family during this difficult time. Nurses willbe involved with the patient and parent/family along thecontinuum, from life-saving measures to palliative care.They likely will spend extended periods with the patient,parents, and other family members, providing a largewindow of opportunity to help shape the experience. Simpleacts of human kindness may provide the most help andcomfort to patients and families during this difficult time atthe end of life (Cherlin, Schulman-Green, & McCorkle,2004; Davies & Connaughty, 2002). These are caring actsthat exemplify exceptional nursing care.

Purpose

The purpose of this integrative review was to describeparents' perspectives on end-of-life care for their children.The findings were intended to guide nursing care to meet theneeds of parents and families at this difficult time.

Background

End of life implies the presence of a chronic disease(s),symptoms, and/or functional impairments that persist, butthey alsomay fluctuate. In addition, symptomsor impairmentsresulting from the underlying irreversible disease requireformal (paid, professional) or informal (unpaid) care and canresult in death (Centers for Disease Control [CDC], 2004).

More than 53,000 children 19 years or younger died inthe United States in 2007, the most recent year for whichstatistics are available (CDC, 2010). Worldwide, thisnumber is much higher, with more than 8 million childrenyounger than 5 years dying each year (Black et al., 2010).Children frequently die in critical care units and withoutpalliative or end-of-life care (Brandon, Docherty, & Thorpe,2007). In the United States, neoplasms, perinatal conditions,congenital anomalies, and sudden infant death syndromecontribute a death rate of 31.6 per 100,000 for all ages,whereas accidents and injuries are the leading cause of deathfor children less than 1 year of age (30.2/100,000) orbetween 15 and 24 years of age (37.4/100,000; CDC, 2010).Approximately 30% to 60% of child deaths in pediatricintensive care units (PICUs) are not unexpected but ratheroccur after the decision to discontinue life-saving treatments(Garros, Rosychuk, & Cox, 2003), providing time fortherapeutic interaction with the parents. Parents' grief can belong lasting due to the unexpected and unexplainable natureof a child's death (Rogers, Floyd, Seltzer, Greenberg, &Hong, 2008), and lack of preparedness can lead to highergrief (McCarthy et al., 2010).

Nurses are in a key position to assist parents facingdifficult decisions in the care of the child at the end of life.

Parents of children at the end of life describe extremeemotions including numbness, despair, sadness, shock, anddepression (Dighe, Jadhav, Muckaden, & Sovani, 2008).They worry about giving up hope (Brandon et al., 2007) andexpress guilt about saying “no” to extreme measures(Dokken, 2006). Parents often experience conflict and tryto make sense of what “is” versus what is desired(Macdonald, Liben, Carnevale, & Cohen, 2008).

Nurses can support parents and families by providingfamily-centered, patient-centered care (Devictor, Latour, &Tissieres, 2008; Longden & Mayer, 2007). Patient-centeredcare includes focusing on the patient's values and treatmentpreferences. Family-centered care focuses on communica-tion and psychological, spiritual, and social support, and it isfacilitated through open visiting hours (Devictor et al.,2008). Nursing should provide timely education, goodsources of information, and descriptions of unfamiliarterms (Berg, 2006; Dighe et al., 2008; Dokken, 2006;Maynard, Rennie, Shirtliffe, & Vickers, 2005; Macdonaldet al., 2008). Education may help ease the process oftransition to end-of-life care (Rishel, 2010).

Method

This integrative reviewwas conducted using the techniquedescribed by Machi and McEvoy (2009). This techniqueinvolved six steps that are completed sequentially, includingselecting a topic, searching the literature, developing theargument, surveying the literature, critiquing the literature,and writing the review. These steps were completed, resultingin this integrative review of the parents' perspectives on careof their child during the end of life, including the transitionto palliative care and the decision to terminate life-savingstrategies. Consistent themes were identified.

Search Strategy

The initial search of the Cochrane databases was completedusing the search term pediatric or child and variouscombinations of brain injury, end of life, hospice, palliative,nurse or nursing, and parent. This search returned no results.Search of the CINAHL database was completed using thesearch term pediatric or child, with various combinations ofbrain injury, end of life, hospice, palliative, nurse or nursing,parent, with limits of English language and human subjects.This search resulted in 198 articles. A further search wascompleted using the terms end-of-life decision and pediatric,and 18 citations were returned. Corresponding searchescompleted using MEDLINE and PsychInfo returned addi-tional 125 and 56 citations, respectively.

Abstracts of all cited publications were reviewed forrelevance to this study. Initial inclusion criteria were researchstudies about parent or family perspectives on end-of-lifecare of children. Specifically, the continuum of care fromcure-focused care to palliation or about the decision to

516 A.P. Aschenbrenner et al.

transition to palliative care was identified. Because of thelimited number of publications identified that met thesecriteria, the inclusion criteria were expanded to include

Table 1 Summary of Articles Included in Integrative Review

Author (Year) Sample L

Summary of nursing articlesData from Berg (2006) 1 mother of deceased

childOne person's n

Data from Davies andConnaughty (2002)

45 parents of deceasedchildren

Limited informabout the studysmall sample s

Data from Dokken (2006) 1 mother of deceasedchild

One person's n

Data from Heller andSolomon (2005)

36 bereaved parents Sample predomCaucasian andretrospective; sselection bias

Data from Maynardet al. (2005)

29 parents of childrenusing hospice care

Sample self-seselection bias;

Data from Widgerand Picot (2008)

39 parents of deceasedchildren

Small sample;

Summary of palliative care articlesData from Cherlinet al. (2004)

12 primary caregiversof deceased patients

Did not look adisciplines or ibehaviors by d

Data from Controet al. (2002)

68 family members of44 deceased children

Low recruitmeselection bias

Data from Digheet al. (2008)

Parents of 20 terminallyill children

Small sample slocation—Indi

Summary of medical articlesData from Macdonaldet al. (2008)

Single case study Retrospective c

Data from Meertet al. (2009)

33 parents or guardiansof deceased children

Single subjectwide range of

Data from Meyeret al. (2002)

56 parents of deceasedchildren

Varying time band child's dearetrospective dlocation; small

Data from Meyeret al. (2006)

56 parents of deceasedchildren

Small, predomlow response,

Data from Seecharanet al. (2004)

79 parents of deceasedchildren

Small, predomlow response,one location

Data from Sharman et al.(2005)

14 parents of childrenwho had life supportwithdrawal recommended

Small numberdeaths; may no

research studies about parent or family perspectives on end-of-life care in general. Additional resources were identifiedduring the literature review process in reference lists of

imitations Conclusions

arrative Many areas for improvementin end-of-life care for childrenand their parents.

ation includedor the sample;

ize

Policies, procedures, staff education,and further research are needed tomeet needs of parents and theirterminally ill children.

arrative Providers not aware of parentalviews and needs during theirchildren's illnesses and deaths.

inantlyChristian;mall sample size;

Many problems with continuityof care are in the power ofclinicians and organizations to fix.

lection process;small sample

Clarification of role of hospice isneeded; care pathway is proposed.

1 location Improvements in communication,relationships, care at time of death,and bereavement follow-up are needed.

t differentdentify studiediscipline

Identified clinician actions thatwere “outstanding” in parents' viewand areas for improvement of care.

nt response rate; Need to improve pediatric palliativecare; describes useful issues toconsider in development of pediatricpalliative care program

ize; studya

Parents have varying degrees ofanticipatory grief; need moreresearch about dealing withterminally ill children.

hart review Recommends more research andclinical training in communication.

may not captureexperiences

Identifies needs of parents' whosechild died in the PICU and theimportance of parent's memoriesin ongoing bereavement.

etween interviewsth 12–45 months;esign; singlesample

Parent's perspectives on prioritiesfor their child's end-of-life careare described.

inantly white sample,self-selection, 1 location

Parent's perspectives on prioritiesand recommendations for theirchild's end-of-life care andcommunication are described.

inantly white sample,selection bias,

Parents reported high levels ofsatisfaction with care; suddendeath led to stronger grief reaction.

compared to totalt represent all parents

Past experiences and anticipationof future influence parental decisionmaking to withdraw life support.

Table 2 Themes With Example Phrases

Themes Example Phrases

1. Poor communication/lack of information

Inadequate or conflictinginformationDifficulty understandingwhat was saidDid not know what to expectLack of privacy duringcommunicationPoor communication aboutchild's condition, who toask for helpLack of information abouthospice

2. Strained relationships/inadequate emotionalsupport

Feelings of being avoidedLack of respectTaking an interestCourtesy, caring, andcompassionLack of compassion andemotional supportSadness, helplessness,hope, and worrySupport limited by focuson cure and treatmentEmotional distress may berelated to single event

3. Parental need to maintainparent/child relationshipsin life and death

Maintain relationshipsSupport from healthcare teamCompassionPrivacyHonestyTrustReceiving a mementoTime to make decisionsand to be with childInclusion of other familymembers

4. Quality of care continuesafter the death of the child

Feeling informedFollow-up after deathRespectNonabandonmentWelcoming environmentAnticipation of needs

5. Influence of services/planning to parent/childimpacts quality of life

Program developmentneeded to improve:Pediatric hospice programsBereavement follow-upContinuity of careMutual goal settingConfidence in quality of careCommunicationEducationWhat to expect at timeof deathAutopsySensitivity, empathyPhysical cares

Table 2 (continued)

Themes Example Phrases

6. Difficult decision toterminate life support

Consideration ofchild's wishesQuality of life, pain anddiscomfortChances for survivalFaithHonest and completeinformationEmotional supportChoices/optionsParents' needsPrevious experiences

517Parent Perspectives EOL

publications reviewed, and abstracts were reviewed in asimilar manner. Publications were excluded if they did notinclude discussion of parent perceptions of experiences at theend of their child's life.

Results

Fifteen research studies met the expanded criteria andwere included in this review (Table 1). All but three studies(Meyer, Burns, Griffith, & Truog, 2002; Seecharan et al.,2004; Widger & Picot, 2008) used a qualitative design toexplore the experiences of parents and families facing end oflife of their child.

Findings

A variety of important areas for end-of-life care wereaddressed in these studies. Some of the investigatorsdescribed parents' experiences at the child's end of life(Berg, 2006; Davies &Connaughty, 2002; Dighe et al., 2008;Dokken, 2006; Heller & Solomon, 2005; Macdonald et al.,2008; Maynard et al., 2005; Meert, Briller, Schim, Thurston,&Kabel, 2009). A number of these investigators also focusedon specific components of the experience, such as themeaning of optimal care (Davies & Connaughty, 2002), whatmatters most to parents (Heller & Solomon, 2005), or parents'needs in the PICU (Meert et al., 2009). Other investigatorsexplored parents' views on parent and family perceptionsabout the quality of care at the end of life (Cherlin et al., 2004;Contro, Larson, Scofield, Sourkes, & Cohen, 2002; Davies &Connaughty, 2002; Meyer et al., 2002; Meyer, Ritholz,Burns, & Truog, 2006; Seecharan et al., 2004; Widger &Picot, 2008).

Although all the investigators were interested in gaining abetter understanding of this experience, different methodswere used. In one study, concerns of parents with a child whohad incurable cancers were explored using informal focusgroups for eliciting parents' attitudes toward informing their

518 A.P. Aschenbrenner et al.

child about their diagnosis and prognosis (Dighe et al., 2008).In another study, the relationships between aspects ofbereavement, gender, type of death, and overall experiencewere evaluated (Seecharan et al., 2004). In contrast, Sharman,Meert, and Sarnaik (2005) had a more narrow focus on theinfluences on parent decision making about life support. Twoindividual self-report papers were found as well (Berg, 2006;Dokken, 2006).

The individual self-report papers (Berg, 2006; Dokken,2006) provided the richest descriptions of experiences at theend of life. They provided detailed examples of many of theissues and problems that were described in other studies.Both authors wrote about their daughters' terminal diagnosesand transitions to end-of-life care. Experiences with a healthcare system that lacked sensitivity and providers who wereunaware of parental needs or opinions related to decisionsabout illness and death were described. Challenges related tocommunication, information, relationships, services, time,resources for decision making, and giving the dying childidentity also were addressed and in more detail than the otherstudies evaluated for this study.

Recurring themes emerged from the review of literaturethat characterized parents' experiences with care of theirchild at the end of life (Table 2). Themes were not mutuallyexclusive; they overlapped along the continuum of care.They represented the range of parents' concerns andexperiences during their child's care. Prominent recurringthemes in the readings included poor communication/lack ofinformation, strained relationships/inadequate emotionalsupport, parental need to maintain parent/child relationshipsin life and death, quality of care continues after the death ofthe child, influence of services/planning on parent/childimpacts quality of life, and the difficult decision to terminatelife support.

Theme 1: Poor Communication/Lack of Information

Poor communication was identified in many studies(Contro et al., 2002; Davies & Connaughty, 2002; Widger& Picot, 2008). Parents expressed dissatisfaction withcommunication processes and information provided tothem about their child's condition (Maynard et al., 2005;Widger & Picot, 2008). Likewise, Davies and Connaughty(2002) found that only 20% (n = 9) of parents interviewedwere satisfied with communication with staff. Parentsrecognized that they received inadequate informationabout their child's condition, but they did not know whomto ask for help (Meyer et al., 2002; Widger & Picot, 2008).They reported having difficulty understanding what pro-fessionals said, and they believed that they occasionallyreceived conflicting or confusing information (Contro et al.,2002; Meyer et al., 2002).

Inadequate information about the child's physical condi-tion was reported as death grew closer, and this situation wascompounded by parents' inability to ask the right questions.Parents did not know what to expect (Davies & Connaughty,

2002). They were confused about when death actuallyoccurred and described two deaths, the spiritual death and themoment when life support was discontinued (Macdonaldet al., 2008). Bad news was shared with parents in the nurses'station, which was a public area (Berg, 2006). Health careproviders' lack of attention to parental concerns wasidentified as well (Dokken, 2006), and parents believed itled to diagnostic delays (Berg, 2006). A lack of provision ofinformation about hospice services available also wasexpressed (Maynard et al., 2005). In summary, communica-tion and information were insufficient and sometimesinappropriate. Parental needs were inadequately met.

Theme 2: Strained Relationships/InadequateEmotional Support

In one study, some parents viewed relationships withhealth care providers as problematic, with one quarter (n =10) expressing that they were not always treated with respectand one third (n = 13) believing they were being avoided(Widger & Picot, 2008). In this same study, 89.7% (n = 35)of respondents indicated they were treated with courtesy,caring, and compassion, and 92.3% (n = 36) believed thathealth care professionals took an interest in their family.These findings appear contradictory. However, most parentscould describe specific negative experiences in great detail,but their overall satisfaction with care was high.

Experience with emotional issues also was a recurrenttheme (Contro et al., 2002; Davies & Connaughty, 2002;Dighe et al., 2008; Dokken, 2006; Maynard et al., 2005).Parents indicated that staff did not have knowledge aboutproviding emotional support and lacked compassion (May-nard et al., 2005). Participants believed that the health careproviders focused on cure and treatment, limiting staffmembers' ability to support parents when cure was no longerpossible (Davies & Connaughty, 2002). Parents described avariety of emotions, including sadness, helplessness, hope,worry about the child's pain and suffering (Dighe et al.,2008), and guilt (Dokken, 2006). An additional finding wasthat profound, lasting emotional distress can be the result of asingle negative event (Contro et al., 2002). Parents reportedthat nurses' seemed to have difficulty supporting their widerange of emotions and indicated that they thought staff haddifficulty with the change in focus away from cure.

Theme 3: Parental Need to Maintain Parent/ChildRelationships in Life and Death

Several investigators described parents' perceptions oftheir needs during the end of their child's life (Contro et al.,2002; Davies & Connaughty, 2002). Parents expressed adesire to maintain relationships with their child throughpresence, words, or symbols (Meert et al., 2009), and theywanted to receive support from the health care team (Meyeret al., 2006). Failure to include or meet the needs of oldersiblings (Maynard et al., 2005), younger siblings, and

519Parent Perspectives EOL

Spanish-speaking family members was reported as signifi-cant deficiencies (Contro et al., 2002). Compassion, trust,honest communication, and privacy also were important(Meert et al., 2009).

At the time of death, nearly all parents expressed a desireto receive a memento, such as the hospital bracelet,footprints, or handprints. However, many parents were notgiven these mementos (Meert et al., 2009; Widger & Picot,2008). In spite of these deficiencies, most parents conveyedsatisfaction with care provided.

Time was identified as a prominent need (Davies &Connaughty, 2002; Dokken, 2006), including time to makedecisions about the end-of-life options (Dokken, 2006).Parents also expressed the desire to spend private time withthe child at the time of death (Meert et al., 2009; Davies &Connaughty, 2002), being allowed to cry and talk or to besilent (Davies & Connaughty, 2002). There were timeconcerns related to wanting more time and feeling rushed tomake decisions (Sharman et al., 2005). Information, time,maintenance of relationships, and saving of a memento wereall important needs described by parents.

Theme 4: Quality of Care Continues After the Deathof the Child

Parent perspectives on the quality of care at the end of lifeprovided the focus for Meyer et al. (2002) and Davies andConnaughty (2002). More than half of the sample of 52parents of children who died in a PICU agreed or stronglyagreed that they were well informed about their child'scondition (86.5%), treatment options (78.8%), chances forsurvival (71.2%), pros and cons of discontinuing life support(67.3%), or continuing treatment (65.4%; Meyer et al.,2002). After death, parents appreciated follow-up in the formof cards, letters, or telephone calls from familiar staffmembers (Meyer et al., 2002; Cherlin et al., 2004).

Actions that family members of terminally ill patientsconsidered outstanding practice included nonabandonment,respect for the patient, care of the family, facilitation of thefamily process, and follow-up with the family after the patientdied (Cherlin et al., 2004). Nonabandonment behaviorsincluded sitting and listening, paying attention, and getting toknow the patient and family. Respect for the patientincorporated actions such as giving patients and familieschoices, being truthful, and explaining why things werehappening. Care of the family promoted family visitation, awelcoming environment, and anticipating family members'needs. Facilitation of the family process also includedwelcoming family visits, signaling the family about changes,indicating closeness to death, and meeting the special needs.Parents identified humanistic practices that may be both time-consuming and nonreimbursable but are vitally important inend-of-life care (Cherlin et al., 2004), including sitting andlistening to patients and families, explaining and givingchoices, including family in care of the patient, and payingattention to the family after the death. Parents focused on

important areas to include in provision of care rather than onrecommendations for improvements in current practices.Communication, follow-up after death, honesty, respect, andanticipation of needswere important to parents, and theywerethe basis of their evaluation of care quality.

Theme 5: Influence of Services/Planning onParent/Child Impacts Quality of Life

Problems identified by some participants helped directrecommendations for changes in practice (Contro et al.,2002; Heller & Solomon, 2005; Maynard et al., 2005).Contro et al. (2002) set out to elicit suggestions forimproving quality of end of life care, prior to the facilityestablishing a pediatric palliative care program. Areas forimprovement included preventable oversights in proceduresor policies, inconsistent bereavement follow-up, inconsis-tencies between pain described by families and parents'perceptions of pain management, and poor preparation ofcommunity hospice programs to deal with pediatric patients.Aspects of services families viewed negatively includedinflexibility of scheduling, disappointment with lack ofavailability of services when emergent needs took prece-dence, and the perception that care providers secretlydiscussed their child (Maynard et al., 2005).

Continuity and coordination of care of children with life-threatening illness were important to parents (Heller &Solomon, 2005). Continuity and coordination of careresulted in a reduction in parental frustration and hypervi-gilance, whereas parental sense of comfort and coherence inthe hospital environment and confidence in quality of carewere enhanced. Parents indicated that it freed them up tosustain “normal routines” such as taking care of otherchildren or going to work. It also facilitated sharing ofparents' and the staff's expertise and information about thechild, increased potential for establishing coherent goalsshared by the health care team and parents, and increasedlikelihood that changes in the child's condition would berecognized in a timely manner (Heller & Solomon, 2005).Consistent care in bereavement follow-up, pain manage-ment, availability of services, and shared goals betweenparents and caregivers were important issues for parents.

Parents were included in identifying some priorities forimprovement (Davies & Connaughty, 2002; Widger & Picot,2008). Protocol, procedure, and policy design must includethe needs of parents and children and be based in principlesof pediatric palliative care (Davies & Connaughty, 2002).The most frequently communicated area for improvementwas communication and providing parents with information.Parents specifically requested more information aboutautopsy results, events surrounding time of death, andincreased frequency of updates (Widger & Picot, 2008).Other priorities identified included increased sensitivity andempathy of health care professionals, as well as improvedphysical and bereavement care. After death, many familiesdescribed feelings of abandonment.

520 A.P. Aschenbrenner et al.

Theme 6: The Difficult Decision to TerminateLife Support

Parents were sometimes faced with the difficult decisionto terminate life support. Almost half of parents (n = 23) hadalready discussed it before being approached by a staffmember (Meyer et al., 2002). Parents identified the child'squality of life, chance of getting better, pain or discomfort,likelihood of surviving hospitalization, and what theybelieved their child would have wanted as important factorsto consider when making this decision (Meyer et al., 2002).Parents' past experiences with end-of-life decisions, thechild's will to survive, understanding of the illness andresuscitation, the need to protect and advocate for the child,medical facts, and faith also were important considerations(Sharman et al., 2005).

Parents identified six areas of importance for their decisionmaking, including honest and complete information, readyaccess to staff, communication and care coordination,emotional expression and support by staff, preservation ofthe integrity of the parent–child relationship, and faith(Meyer et al., 2006). When the decision was made, parentsfelt informed about the child's condition, treatment options,chances for survival, and pros and cons of discontinuing lifesupport or treatment. Parents did not believe they had controlover their child's final days, and many (n = 13) parents wouldhave made decisions differently if they were provided theopportunity (Meyer et al., 2002). Parents wanted to avoid thedecision entirely, and they recommended making choicesearly (Sharman et al., 2005). The child's needs and wishes,prognosis, and parents' need for control were importantcomponents of decision making for children at the end of life.

Limitations of Studies

Studies that met the inclusion criteria were primarilyconducted using qualitative content analyses, using con-venience sampling techniques through inclusion of partic-ipants who met eligibility criteria, and were easilyaccessible to the researchers (Hulley, Cummings, Browner,Grady, & Newman, 2007). Convenience samples provideeasy access to subjects, but they provide the leastgeneralizable form of sampling (Bluman, 2009; Polit &Beck, 2008). The quality of reports varied. Some in-vestigators used questionnaires that had establishedreliability and validity (Seecharan et al., 2004). Othersused questionnaires that had been developed for previousstudies (Meyer et al., 2006), or interview guides or surveysthat were developed for the particular study (Meyer et al.,2002; Widger & Picot, 2008). In one case, the interviewguide was pilot tested to increase its reliability and validity(Contro et al., 2002). Frequently, inadequate informationwas provided about the instrument for the reader to have aclear understanding of the purpose of the interview orscope of information collected.

Many investigators acknowledged limitations of smallsample sizes (Berg, 2006; Davies & Connaughty, 2002;Dighe et al., 2008; Dokken, 2006; Heller & Solomon, 2005;Maynard et al., 2005; Meyer et al., 2002; Meyer et al., 2006;Sharman et al., 2005; Widger & Picot, 2008). Study samplesizes ranged from 1 to 79 participants. In addition, someinvestigators acknowledged potential sample bias resultingfrom self-selection of participants (Contro et al., 2002;Heller & Solomon, 2005; Maynard et al., 2005; Seecharanet al., 2004).

Overrepresentation of Euro-American participants wasevident, even when samples were drawn from moreheterogeneous populations (Heller & Solomon, 2005;Meyer et al., 2002; Meyer et al., 2006; Seecharan et al.,2004). Many investigators did not report demographiccharacteristics (Cherlin et al., 2004; Contro et al., 2002;Davies & Connaughty, 2002; Heller & Solomon, 2005;Maynard et al., 2005; Widger & Picot, 2008), making itdifficult to generalize findings or identify importantcultural considerations.

The retrospective nature of these studies also may haveinfluenced findings. Reports were elicited from 7 to 45months after the child died. Although investigatorsremarked about the vividness of memory for these parentsand other family members, there was no verification thatthe memories were reliable. Recall of events over time maylead to recall bias (Callas, 2008), threatening the validity ofthe memories. However, memories belong to the parentsand represent their reality. These memories have meaning,and they deserve consideration.

Discussion

The literature search exposed a dearth of publishedresearch addressing parents' needs during the end of theirchild's life. Available studies were focused primarily on aparticular stage during the end-of-life continuum. A focus onparent's needs in specific circumstances, such as prolongedterminal illness or a sudden change of condition due toinjury, also was lacking. The lack of knowledge in this arealimits the conclusions that can be made about parental needsat this time.

The integrative review revealed important themes relatedto parents' needs at the end of their child's life. Manydeficiencies were identified, including lack of communica-tion and information. Parents' perception of caregivers'concern was less than they desired. Parents believed thatrespect was insufficient and that they were avoided. In spiteof these feelings, parents believed they were treated withcourtesy, caring, and compassion. Parents expressed a needfor more emotional support than they received for the widerange of emotions they experienced. Some parents believedtheir emotional needs were inadequately met, particularlywhen the focus changed and cure was no longer the goal.

Nurses can encourage parents to discuss their feelings,emotions, and beliefs about their child's care, including such

521Parent Perspectives EOL

issues as withdrawal of life support, quality of life, likelihoodof improved prognosis and/or survival, and perception oftheir child's comfort (Meyer et al., 2006). Pain management,educating parents about the process of assessment andintervention, ensuring that parents know who to talk toabout questions and psychosocial needs, and encouragingparents to ask for family–staff meetings to gain information,clarity, and support are priorities for quality nursing careduring this stressful time. Community pediatricians, religioussupport persons, and palliative care programs may beconsulted and made available during all phases of hospital-ization, not just at the end of life (Meyer et al., 2006). Hospiceoptions should be introduced early, with clear descriptions ofservices available through hospice and palliative care(Maynard et al., 2005).

Continuity of care is essential, and a care coordinatorthroughout the child's illness, creative scheduling, portabil-ity of treatment plans, regularly documented familymeetings, computer software for record keeping andcommunication, and staff orientation about family-centeredcare help ensure quality, seamless care (Heller & Solomon,2005). Clinicians and health care organizations are obliged toidentify and address existing barriers to quality care.Research and education for professionals who deal withterminally ill children must be a priority.

Nurses have an opportunity to help parents meet theseneeds during the difficult transition to end-of-life care fortheir children. Nurses must assess parents' needs forinformation about their child's condition. Attention is neededwhen determining the importance of timing, the sensitivenature of the situation, and parents' need for information. Thechange in focus from cure to care may make it difficult forsome nurses to support parents' emotional needs. Parents maysense this discomfort and interpret it as avoidance. It isimportant that nurses process their own feelings first beforelearning and implementing specific techniques for supportingemotional needs of parents. A vital consideration is that onenegative event or interaction may be remembered by parentsforever, and it may cause enduring emotional distress.

Parents' perception of care quality may be improved withbetter communication, follow-up after death, honesty,respect, and anticipation of needs. A dedicated pediatricend-of-life service, promoting continuity of care, includingprovision of hospice and bereavement services may improvenurse's ability to meet parents' needs. Parents are positionedto make difficult decisions. It is important that nursesconsider the prognosis, the child's needs and wishes, and theparents' need for control. Enhanced nurse–parent relation-ships could facilitate this decision making.

Most importantly, it is vital that nurses understandparents' perceptions of their child's end-of-life care, forexample, their need for emotional support for decisionmaking. However, little is known about this important healthcare issue. It is unknown whether the needs are differentwhen the loss of the child is prolonged with chronic illness,such as cystic fibrosis, or when it is sudden and unexpected,

as experienced with traumatic brain injury. In order fornurses to deliver quality, evidence-based care at thisimportant juncture, further research is needed. A number ofchallenges exist when dealing with the sensitive and grief-laden nature of this experience for parents. This area ofresearch may reveal key similarities and differences inparental experiences and needs. In addition, it is imperativethat diverse samples are included to represent ethnic, racial,religious, gender, and geographic differences in parentalexperiences and needs. Further research may help to directbetter end-of-life care for children and their parents duringthis very difficult time.

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