Journal of Pediatric Nursing (2014) 29, 660–669

When a Child Dies: Parents' Experiences ofPalliative Care—An Integrative Literature Review

Christina Melin-Johansson RN, MSNa,⁎, Inge Axelsson MDa,b,Marie Jonsson Grundberg RN, MSNb, Frida Hallqvist RN, MSNb

aDepartment of Nursing Sciences, Mid Sweden University, Studiegången 1, Östersund, SwedenbChild and Adolescent Medicine, Östersund hospital, Kyrkgatan 16, Östersund, Sweden

Received 18 September 2013; revised 24 May 2014; accepted 20 June 2014

h0

Keywords:Communication;Family;Literature review;Palliative care;Pediatrics;Support

The aim of this integrative review was to increase knowledge about parents' experiences of palliativecare when their child is dying or has died due to illness using Whittemore and Knafl (2005) analysisprocess. Computerized databases were used to search the literature. Nine papers met the inclusioncriteria. The analysis resulted in five categories: genuine communication, sincere relationships, respectas an expert, and alleviation of suffering and need of support, including 15 subcategories. Healthprofessionals need education to provide high-quality pediatric palliative care. They especially needtraining concerning existential issues, and further studies need to be performed.© 2014 Elsevier Inc. All rights reserved.

LOSING A CHILD due to illness is one of the worst crisesthat can happen to a family. The family faces great difficulties,and it is stressful for pediatric palliative care staff to care for achild with a terminal illness. Such care requires a great deal ofknowledge, understanding and compassion for the child andthe parents' situation (Hallström & Lindberg, 2009).

Background

In Sweden, 556 children between the ages of 0 and19 years died in 2011. The causes of death varied greatlyamong different age groups, but deaths due to accidents werethe most common, followed closely by death from disease(The National Board of Health and Welfare [NBHW], 2011).Despite the circumstances, an overall goal of pediatric

⁎ Corresponding author: Christina Melin-Johansson RN.

E-mail address: titti.melin-johansson@miun.se.

ttp://dx.doi.org/10.1016/j.pedn.2014.06.009882-5963/© 2014 Elsevier Inc. All rights reserved.

palliative care is to support the children to live as normal alife as possible (NBHW, 2011). According to the WorldHealth Organization, palliative care for children is aspecialized area, albeit related to adult palliative care.Effective palliative care for children entails an extensivemultidisciplinary approach and can be provided in hospitals,in hospices or in the home, and can be effectively appliedeven if resources are inadequate (WHO, 2013). The resultsreveal that parents of children at the end-of life prefer thechild to be cared for at home rather than at a hospital(Kassam, Skiadaresis, Alexander, & Wolfe, 2013). Palliativecare for children begins when illness is identified andanalyzed, and continues during the entire illness trajectory,aiming to alleviate physical, psychological, and socialsuffering (WHO, 2013). According to health care profes-sionals, palliative care is deemed to be of a high quality whenpersonnel are able to create a close relationship with the childand their families (Klassen, Gulati, & Dix, 2012; McCloskey& Taggart, 2010). On the other hand, these closerelationships may cause sadness and a sense of loss whenthe child dies (Contro, Larson, Scofield, Sourkes, & Cohen,2004; McCloskey & Taggart, 2010).

661Parents' Experiences of Palliative Care

The parents of dying children face difficult situations, suchas having to make decisions about the child's treatment,informing relatives and friends, providing information to thechild and explaining the disease and possible treatments(Enskär, 1999; Kars, Grypdonck, & van Delden, 2011). Anintegrative literature review on the parents' perspective on endof life care for their child found that communication,information and relationships were poor or inadequate andthat the impact of care on quality of life was essential(Aschenbrenner, Winters, & Belknap, 2012). Parents are tornbetweenwanting to bewith their sick child asmuch as possiblewhile also being forced to continue with everyday tasks. Dailyroutines are nevertheless a necessary break to gather strengthand continue being a responsive and caring parent to the dyingchild (Kars et al., 2011). Together, parents and childrenundergo emotional phases during palliative care. For parents,this means not only managing their own emotions but alsoserving as a support system for their sick child and any siblings(Enskär, 1999; Kars et al., 2011).

How families are acknowledged by health care profes-sionals is important for their well-being and has implicationsfor how parents deal with grief after the death of their child.Few studies examine how parents of children deal withincurable disease and experience palliative care. Thisintegrative literature review is therefore important, and is thebasis for the design of a future intervention study consisting oftraining health professionals in pediatric palliative care andparents of children with incurable cancer.

Aim

The aim of this integrative literature review was tocontribute to the knowledge and understanding of parents'experiences of palliative care when a child in the family isdying or has died due to illness.

Method

Design

This study used an integrative literature review method toconfirm, extend and/or refute qualitative and quantitativestudies. The analysis of the literature was supported by theWhittemore and Knafl (2005) method of process to meet thegeneral research question.

Literature Searches

Scientific papers were searched for in the PubMed,PsycInfo and CINAHL databases. Searches in The CochraneLibrary yielded no relevant results. All searches wereperformed with the keywords Pediatrics and Child orusing the filter ‘child 0–18 years'. No time limits for years

were used. Peer-reviewed papers in Swedish or English werescreened. All abstracts were reviewed. Papers were alsosearched manually, and the related citations in the papersfound in the PubMed database were checked. No newrelevant papers were found using these other methods. Atotal of 52 papers that met the study aim were selected andreviewed in their entirety for further analysis (Figure 1).

Sample

Papers were excluded if they did not focus primarily onparents' experiences of the care of the child, only describedthe experiences after the child died, were about acute deathsand deaths in intensive care units, only focused on parents'perceptions of the medical care, or described experiences ofspecial care programs. A total of nine papers (six qualitativeand three quantitative studies) were finally included andselected for analysis.

Classification and Quality Assessment

Papers that met the inclusion criteria were read andclassified using a tool published by the Swedish Council onHealth Technology Assessment SBU (1999). In this manual,quantitative studies are divided in randomized controlledstudies, clinical trials, and descriptive studies (DS). Qualitativestudies are termed Q. The included papers were qualitychecked using a template by Willman, Stoltz, and Bahtsevani(2011) to obtain a detailed and systematic assessment of thecontent. To be rated as a high-quality study, at least 75% of thequestions asked in the template should be answered with a‘yes’. For a medium quality study, 50–75% should beanswered ‘yes’, and any study with below 50% ‘yes’ answerswas assessed to be of low quality. None of the studies wereassessed to be of low quality. An overview of the includedpapers is presented in Table 1.

Data Analysis

The nine papers used descriptivemethods that did not allowdata to be interpreted or abstracted on a higher level. Theywereread in their entirety several times to obtain an overall pictureof the content. The papers results were translated into Swedishand compared to minimize misinterpretations and to ensurethat no information was lost. The analysis was guided by theresearch question: “What does this study tell us about parents'experiences when a child in the family is dying or has died?”Data were compiled in a matrix and reduced by extractingrelevant meaning units and checked with the original sourcerepeatedly. Meaning units were carefully encoded andcompared with each other to find patterns of similarities anddifferences. Related codes were identified, grouped andcomparedwith each other. Data were combined and categorieswith subcategories were created, and synthesized. The processof the analysis was discussed continuously among the authors.

PubMed (n=30) Cinahl (n=16) PsycInfo (n=6)

Excluded articles after reading the abstracts (n = 34), including duplicates (n = 9)

Excluded after reading the whole article (n = 9)

Articles that met inclusion criteria (n = 18)

Inclusion criteria’s:- Articles about parents' experiences /

perspectives /experiences ofpalliative care / end of life care, andtheir needs

- English/Swedish- Children 0-18 år- Peer Reviewed

A total of nine articles in the integrative literature review (6qualitative and 3 quantitative).

Searches January and February 2013Search terms: Terminal Care, Palliative Care, Death and Dying, Dying Child, Pediatrics, Professional -

Family Relations, Family, Parents, Parents’ Perspectives, Parental Attitudes, Pediatric Nursing, Experienc*.A total of 52 articles were selected for further reading and investigation

Figure 1 Overview of sampling procedure.

662 C. Melin-Johansson et al.

Results

The six qualitative papers included in this study used semi-structured interviews analyzed with content analysis, and thethree quantitative papers used questionnaires analyzed withdescriptive statistics. The studies were performed in the UnitedStates (4), Australia (3) and Canada (2). The results describefive categories; sincere communication, genuine relationships,respected as an expert, alleviation of suffering, and need ofsupport, with 15 subcategories. These categories and relatedpapers are described in Table 2.

Sincere Communication

Parents provided prerequisite straight and truthful informa-tion about the child's well-being, and want this to bedocumented in the child's care plan. They need to be involvedbut not rushed into decision-making, and conversations aboutdeath should be modified to the family's needs.

Delivery of InformationParents described that general information from the

nurses on the ward was important and that this should bedelivered in everyday language that was easy for both

parents and the child to understand (Contro, Larson, Scofield,Sourkes, & Cohen, 2002;Monterosso, Kristjanson, & Phillips,2009; Weidner et al., 2011; Widger & Picot, 2008). Parentsappreciated that bad news regarding diagnosis, treatment,prognosis, or news that their child was dying were conveyeddirectly and honestly, and preferably with compassion andcaution, in a hopeful way, from a person known by the parents.At the same time, parents need to be ready to acceptinformation related to their child's impending death (Controet al., 2002; Monterosso & Kristjanson, 2008; Heath et al.,2009; Weidner et al., 2011). Some parents had to expendeffort to extract information from the staff about the child'sprognosis (Robert et al., 2012). Other parents did not receiveupdates on the child's condition as often as they wished(Heath et al., 2009).

Transmission of InformationParents noted that different health professionals could ask

the same questions several times, which was disturbing.Good documentation and reporting of the child's care planbetween providers, departments and hospital facilities weredesired (Robert et al., 2012; Widger & Picot, 2008). If thechild was moved from one department and if there weregaps, contradictions or discontinuities in information, the

Table 1 Overview of included studies in the findings.

Author, year and country Aim/objective Design and sample Main findings Q = qualitative studies (n = 6)DS = descriptive studies(Quantitative studies n = 3)Grades of quality assessment:high, medium, low

Data from Controet al. (2002)USA

To the families' experiencesof pediatric palliative care,gain knowledge on how toimprove it

Qualitative study 68 English- andSpanish-speaking families of44 deceased childrenSemi-structured interviewsanalyzed with content analysis

Parents were not satisfied with their communicationand how information was provided nor were theysatisfied with how their needs were met. Pain inchildren was a problem area for the families, butthey felt that the children's pain was managedadequately.It was disclosed that the local hospice programswere ill prepared when providing palliative careto children

Q High quality

Data from Heathet al. (2009)Australia

To determine how satisfiedparents are with the care givento children dying of cancer

Quantitative study 96 parents of childrenwho died of cancerInterviews and questionnaires werepresented with descriptive statisticsin tabular form

The majority of parents were satisfied with thepalliative team, involved in their child's care.Most felt that the discussions regarding decisionsabout treatment, was appropriate and it was easyto understand what was said. Overall the parentswere happy with who made decisions regardingtheir child's treatment

DS High quality

Data fromHeller andSolomon (2005)USA

To the parents' descriptionsand experiences of carewhen their children sufferedlife-threatening illness, getinformation on how qualityof care can be improved

Qualitative study 36 parents/guardiansof 34 children who died due to illness.Semi-structured interviews withopen-ended questions were analyzedusing content analysis

Parents' concerns and experiences of continuityof care was described in terms of the quality andcontinuity of relationships with health professionals,as well as the continuity and content of theinformation they received about their child'scondition and care. The parents felt that thecontinuity of relations with staff led to that the childreceived the best possible care

Q High quality

Data fromJames andJohnson (1997)Canada

To identify parents' perceptionsof their needs during thepalliative phase of theirchild's illness

Qualitative study 12 parents of eightchildren who died of cancerSemi-structured interviews analyzedwith content analysis phenomenologicalapproach

The parents wanted their children to receive specialtreatment, while this clashed with the desire topreserve normalcy in the child's and family's lives.They needed care and affection with healthprofessionals and wished to retain responsibility asthe primary caregivers for their dying child

Q High quality

Data from Monterossoand Kristjanson (2008)Australia

Identifying the palliative andsupportive care needs ofparents of children who diedof cancer

Qualitative study 24 parents of 24children who died of cancerSemi-structured interviews wereanalyzed with latent content analysis

Genuine and honest relationships with healthprofessionals were highlighted as an important aspectof care. Parents stressed the need that staff showedcompassion and were attentive to the individualneeds of families. There was also a need to includechildren in decision-making

Q High quality

Data from Monterossoet al. (2009)Australia

Identifying the palliative andsupportive care needs ofparents of children who diedof cancer

Quantitative study 69 parentsInterviews by several surveyinstrumentsDemographic data and the remainingresponses were compiled and analyzedwith descriptive statistics

Parents stressed the importance of clear and honestinformation about their child's condition andprognosis throughout the period of illness. Theypreferred to care for their child at home andsupported by family and friends. They also needed toget help and support from health professionals to beable to care for the child in the home. Many familieswere affected emotionally and financially to care fora child with terminal cancer and needed support forthis as well

DS Medium quality

Data from Robertet al. (2012)USA

Trying to understand the needsand experiences of bereavedparents whose children havebeen treated at a cancer unit.Their perception of care, theirexpectations of palliative careand their recommendations onhow best to improve palliativecare for children with cancerand their parents

Qualitative study 14 parents fromnine families'Focus group interviews, three meetingswith two, seven and five parents ineach groupExploratory semi-structured interviewswere analyzed with latentcontent analysis

Parents appreciated the continuity of care and valuedgood relationships with health professionals. Theyagreed that continuity of care was the key to buildingtrust, relationships and good communication. Theparents believed that every child was unique, as aretheir diagnoses, and treatment should be adjustedaccordingly. Parents appreciated staff who could talkabout death and end of life care

Q High quality

Data from Weidneret al. (2011)USA

To identify the key elementsof care at end of life; care byparents whose children diedeither in hospital or at home

Qualitative study 29 parents from20 families.Semi-structured interviews and afocus group interview. The materialwas analyzed with content analysis

Communication was identified as an importantcomponent of care. Parents want good informationand guidance in order to make decisions about thechild palliative care. They wanted the healthprofessionals to respect their role as primarycaregivers and knowledgeable experts ontheir children

Q High quality

Data from Widgerand Picot (2008)Canada

To the parents' perspective,describing the quality ofcare during and after theirchild died

Quantitative study 38 families of 40deceased children.Interviews based on a self-designedquestionnaire and the results havebeen presented with descriptive statistics

Parents identified several problem areas:communication between health professionals,relationships with staff, care at the moment of death,and follow-up after the child died

DS Medium quality

663Parents' Experiences of Palliative Care

664 C. Melin-Johansson et al.

parents became anxious and more aware of the monitoring ofthe child (Heller & Solomon, 2005; Robert et al., 2012).Some parents received conflicting or mixed informationfrom different health professionals regarding the child'scondition and treatment, resulting in confusion and stress(Contro et al., 2002; Heller & Solomon, 2005; Widger &Picot, 2008). Other parents felt that they rarely or neverreceived conflicting information (Heath et al., 2009).

Conversations About DeathParents emphasized the importance of health profes-

sionals' ability to discuss end-of-life care and the transitionto palliative care and death, and some parents lackedclarification about what the transition to palliative caremeant in practice (Monterosso & Kristjanson, 2008;Robert et al., 2012). The parents were upset when staffavoided talking about death, and many parents emphasizedthe importance of receiving information about whathappens when a child approaches death. Parents werealso upset if staff did not adapt discussions about end oflife care to the needs of the families and were insensitiveand uncaring in their manner (Heath et al., 2009; James &Johnson, 1997; Weidner et al., 2011; Widger & Picot,2008; Robert et al., 2012).

Decision-Making at the End of LifeParents appreciated being involved in making decisions

about their child's treatment and care (Contro et al., 2002).They felt comfortable with the discussions, if the timing wasappropriate and if they understood what was discussed(Heath et al., 2009). Other parents spoke about thetremendous burden they shouldered when decisions had tobe made when their child approached death. They neededguidance and support (Weidner et al., 2011) and consistentinformation (Heller & Solomon, 2005). It was important forthem to obtain all the information they needed and not to berushed into making a decision (Weidner et al., 2011). Beinginvolved in the child's care increased parental participationin decision-making and provided a sense of control (James &Johnson, 1997).

Genuine Relationships

The family members appreciated continuous, sincere andcompassionate support in relation to the staff, and being seenas individuals created a sense of trust and security. Theparents appreciated when the relationship between the childand staff was based on genuine care treating the child as aperson, not a disease.

Secure InteractionA good relationship was based on staff and family

getting to know each other, being interested in one anotherand the family members being seen as individuals (Heller& Solomon, 2005; Widger & Picot, 2008). Parents'wanted staff to be there for the family from the beginning

to the end and further into the mourning period. They alsoappreciated it if staff could visit the family when off duty,and be with the dying child and the family (Heller &Solomon, 2005) or make other efforts above and beyondtheir normal job duties (Monterosso & Kristjanson, 2008;Robert et al., 2012).

Empathy and PresenceThe most desirable features of the nursing staff were

compassion and commitment (Contro et al., 2002; James &Johnson, 1997;Monterosso&Kristjanson, 2008; Robert et al.,2012; Widger & Picot, 2008), honesty (Contro et al., 2002;Monterosso & Kristjanson, 2008), providing care (Robertet al., 2012; Widger & Picot, 2008), being able to showemotions (James & Johnson, 1997; Robert et al., 2012),clinical precision and accessibility (Contro et al., 2002),courtesy (Widger & Picot, 2008), respectfulness (James &Johnson, 1997) and taking time for discussions (Robert et al.,2012). The parents wanted a sincere relationship with the staff,as it was difficult to cope with surprises or disappointmentassociated with false hopes, e.g., being realistic in terms of thechild's condition and future. Compassion and small acts ofkindness, or simply being there, contributed to goodrelationships and to positive memories of the hospital stay(Monterosso & Kristjanson, 2008; Weidner et al., 2011).

Uncertainty and AbandonmentParents doubted care when staff did not acknowledge

their emotions and were more focused on the tasks to beperformed (James & Johnson, 1997). A negative impact oncare was also related to misunderstandings or when staffwere abrupt, unemotional or did not listen to the parents'concerns (Contro et al., 2002; Widger & Picot, 2008).Parents were not always treated with respect and felt thatstaff avoided or even abandoned them (Widger & Picot,2008; James & Johnson, 1997), leading to feelings ofisolation during the palliative phase of their child's illnessand that they had been physically and emotionally distancefrom staff with whom they had a frequent and personalrelationship in the past (James & Johnson, 1997).

Child-Centered CareParents appreciated when the staff encountered their

child as a unique individual with a terminal diagnosis, andnot as a ‘disease’. Parents wanted to see that the emotionaland physical needs of the child created personalized andcreative solutions (Weidner et al., 2011; Robert et al., 2012),and that the relationship the staff developed with the childwas based on honest care (Monterosso & Kristjanson, 2008;Monterosso et al., 2009). Often, the staff respected and metthe child's desires (James & Johnson, 1997; Heath et al.,2009), and if the parents' needs were met, the children'sneeds were also met (James & Johnson, 1997). Parentswanted the staff to talk directly to the child and to includethose children who were old enough in the discussions(Heath et al., 2009).

Table 2 Categories, subcategories and related articles.

Categories Subcategories Related articles

Sincerecommunication

Contro et al., 2002; Heath et al., 2009; Monterosso & Kristjanson, 2008;Monterosso et al., 2009; Robert et al., 2012; Weidner et al., 2011;Widger & Picot, 2008

Transmission of information Contro et al., 2002; Heath et al., 2009; Heller & Solomon, 2005;Robert et al., 2012; Widger & Picot, 2008

Conversations about death Heath et al., 2009; James & Johnson, 1997; Monterosso & Kristjanson, 2008;Robert et al., 2012; Weidner et al., 2011; Widger & Picot, 2008

Decision making at the end of life Contro et al., 2002; Heath et al., 2009; Heller & Solomon, 2005;James & Johnson, 1997; Weidner et al., 2011

Genuine relationships Secure interaction Heller & Solomon, 2005; Monterosso & Kristjanson, 2008;Robert et al., 2012; Widger & Picot, 2008

Empathy and presence Contro et al., 2002; James & Johnson, 1997; Monterosso & Kristjanson, 2008;Robert et al., 2012; Weidner et al., 2011; Widger & Picot, 2008

Uncertainty and abandonment Contro et al., 2002; James & Johnson, 1997; Widger & Picot, 2008Child-centered care Heath et al., 2009; James & Johnson, 1997; Monterosso & Kristjanson, 2008;

Monterosso et al., 2009; Robert et al., 2012; Weidner et al., 2011Continuity and availability Contro et al., 2002; Heller & Solomon, 2005; Monterosso & Kristjanson, 2008;

Robert et al., 2012Respected as an expert Important caregivers James & Johnson, 1997; Weidner et al., 2011

Assessments affirmed Contro et al., 2002; James & Johnson, 1997; Monterosso & Kristjanson, 2008Alleviation of suffering Contro et al., 2002; James & Johnson, 1997; Monterosso & Kristjanson, 2008;

Monterosso et al., 2009; Weidner et al., 2011Need for support Care at home James & Johnson, 1997; Monterosso & Kristjanson, 2008;

Monterosso et al., 2009; Weidner et al., 2011Respite and relief James & Johnson, 1997; Monterosso et al., 2009; Robert et al., 2012Maintaining normality James & Johnson, 1997; Monterosso et al., 2009; Robert et al., 2012Dealing with grief Contro et al., 2002; Heller & Solomon, 2005; James & Johnson, 1997;

Monterosso & Kristjanson, 2008; Robert et al., 2012;Widger & Picot, 2008; Weidner et al., 2011

665Parents' Experiences of Palliative Care

Continuity and AvailabilityParents valued the continuity and availability of care

(Monterosso & Kristjanson, 2008), and being surrounded bythe same staff created security and satisfaction (Heller &Solomon, 2005). Staff continuity facilitated the exchange ofknowledge regarding the children's condition, which wastrue both among staff and between staff and parents (Heller& Solomon, 2005). Care was considered to be optimal whenthe staff and the family got to know one another (Heller &Solomon, 2005; Robert et al., 2012). Contact with familiarmembers of staff with overall responsibility for all phases ofcare was seen as crucial aspects of high-quality care (Controet al., 2002). Confidence and understanding between staffand family created a sense of trust and security for parents(Robert et al., 2012), while not being surrounded by the samestaff led to feelings of distrust, anxiety and suffering, whichincreased the feeling that their child was suffering andvulnerable (Heller & Solomon, 2005). Continuity of care waskey in building trust and relationships (Robert et al., 2012).

Respected as an Expert

Parents desired to be respected and acknowledgedin their role as primary care givers and wanted staff

to listen to them and act on their concerns about thechild's well-being.

Important CaregiversParents wanted to continue to act as primary caregivers to

their children (James & Johnson, 1997), emphasizing theimportance of the staff respecting their role as parents and theirwish to be equipped with the tools and knowledge needed forthis role (Weidner et al., 2011). Although parents desired to doasmuch as possible for their child independently, this had to becombined with help from health professionals to prevent thechild's discomfort (James & Johnson, 1997). Parents wantedto accomplish the tasks parents usually perform for theirchildren, such as changing diapers, dressing and bathing thechild (Weidner et al., 2011).

Assessments AffirmedParents noted that their concerns, intuitions and sugges-

tions regarding the child's physical condition and healthwere confirmed and acted upon by staff. However, if the staffdid not affirm parents' assessments, this resulted in feelingsof frustration (James & Johnson, 1997). Some staff lackedrespect for the parents' judgment regarding the care of theirchildren, which troubled them and complicated their grief

666 C. Melin-Johansson et al.

even several years later (Contro et al., 2002). Parents alsowanted staff to always listen to them and take them seriously.If parents were involved in the care process, it reduced theiroverwhelming sense of powerlessness and provided somecontrol over the uncertainty they felt (Monterosso &Kristjanson, 2008).

Alleviation of Suffering

Parents underscored the importance of the child beingas comfortable as possible and free from physical andmental pain.

Parents needed to be assured that the child was comfortable,which included assistance with pain relief (Monterosso &Kristjanson, 2008; Monterosso et al., 2009). The staff's abilityto manage the child's pain was important, as was balancingbetween the child being in pain while awake and being able tointeract with the family (Weidner et al., 2011). Parents felthelplessness, frustration and lack of control in terms ofalleviating their child's pain and suffering (Contro et al., 2002;James & Johnson, 1997). They emphasized the importance ofproviding assistance when the child had physical limitations,such as labored breathing (Weidner et al., 2011), as well as thechild's need to be free from anxiety (Monterosso &Kristjanson, 2008; Weidner et al., 2011).

Need for Support

Parents needed support to maintain the child's normallifestyle and make the most of the time they spent with theirchild. Contact with health care professionals was importantto the parents while the child was alive, as well asposthumously, when follow-ups were needed to avoidfeelings of being abandoned.

Care at HomeParents needed to spend as much time as possible with their

children at home (Monterosso & Kristjanson, 2008; Weidneret al., 2011) and stressed the importance of having sufficientresources to be able to care for the child (Weidner et al., 2011).They needed help with financial resources, paperwork,equipment and training to maximize the time they spent withtheir children (Monterosso et al., 2009; Weidner et al., 2011).While some parents described that they did receive enoughassistance from staff to feel secure, supported or informedregarding the care of the child at home (Monterosso &Kristjanson, 2008) others did not (James & Johnson, 1997).

Respite and ReliefParents' need of temporary respite had to be balanced

with the time spent with the child. If parents temporarily leftthe child, they were extremely worried that their child woulddie alone or with someone unknown present. Consequently,no matter how tired they were, they would stay with thechild. Parents needed to be with and care for the dying child,

even if doing so was in conflict with other responsibilities(James & Johnson, 1997). They could become so involvedwith the sick child that they neglected other family roles andresponsibilities (Robert et al., 2012). Many parents relied onthe support of those around them, such as relatives, to free upsome time with their children, but many instead chose not toask for help and respite and relief (Monterosso et al., 2009).

Maintaining NormalcyParents sought knowledge on how to maintain a normal

lifestyle with the dying child (Monterosso et al., 2009), wishingto preserve as many aspects as possible of a normal childhood,while also wanting special treatment and care to be provided totheir child. They struggled to maintain a balance in thisthroughout the child's illness and appreciated nursing staffs'attempts to preserve normalcy. The children themselves desirednormalcy in their lives, for example, by going to school, andsupport from school and friends in this regardwas valued by theparents (James & Johnson, 1997; Robert et al., 2012).

Dealing with GriefParents required help from the staff in creating mementos

after the child died (Weidner et al., 2011). Hand and footprintswere made, and locks of hair or ID bracelets were kept. Someparents desired to be with, and bathe and dress their child afterdeath (Widger & Picot, 2008). Most health-care relationshipsended when the child died, but it was easier for the parents toadapt to their loss if staff provided some kind of follow-up afterthe death of the child (Monterosso & Kristjanson, 2008). Theneed for unity was still there after the child died, and continuedcontact with the staff was meaningful (Contro et al., 2002;James & Johnson, 1997). Parents requested follow-up after thechild died (Contro et al., 2002;Heller& Solomon, 2005; James& Johnson, 1997;Weidner et al., 2011;Widger & Picot, 2008)and appreciated it when the staff called, sent cards, or went tothe funeral (Contro et al., 2002; Heller & Solomon, 2005;Weidner et al., 2011). A minimum lack of attention regardingemotional needs was particularly devastating (Heller &Solomon, 2005), and when no follow-up was made, theparents felt abandoned (Heller & Solomon, 2005; Widger &Picot, 2008). They needed information about whom to contactfor advice and bereavement support (Robert et al., 2012;Weidner et al., 2011; Widger & Picot, 2008).

Discussion

The main results in this review were that parents valuedopen and honest communication, true relationships withnursing staff, being respected as experts in the care of theirchild, and the recognition that they needed support. Our reviewalso indicates that emotional and existential issues raised byparents of terminally ill children have not been studied to anygreat extent in pediatric care. Talking about death and copingwith grief were areas of an existential and spiritual nature thatthe parents in our review described. After death, the parents

667Parents' Experiences of Palliative Care

maintained relationship with the child through memories,memorials, by donating organs and creating support groups.This has also been described by Meert, Thurston, and Briller(2005). Parents in our review asked specifically for counselingand bereavement support after the child's death. According toAschenbrenner et al. (2012), high-quality care continues afterthe child's death and, in addition to follow-up, includes staffpaying attention to the family and not forsaking them. Parentsvalued health professionals who kept in touch after the childdied, which helped the parents to cope with their grief. Theyexperienced that staff became a part of their family andtherefore felt abandoned when they no longer had the samecontact after the child's death. This phenomenon was alsofound by deCinque et al. (2006) and Macdonald et al. (2005).

Parents needed open and honest communicationwith healthprofessionals, and desired staff to communicate in a respectful,responsive and empathetic manner when bad news wasdelivered. In our review, parents consistently desired to receiveas much information as possible about the child's conditionand prognosis. According to Aschenbrenner et al. (2012) andContro et al. (2004) health professionals often feel stressed andinformation provided is sometimes inadequate or conflictingand difficult to understand.

The parents in this review also wanted information to berepeated on several occasions, to receive updates frequentlyand to have the opportunity to ask questions. The nurses onthe pediatric wards have the most contact with children andtheir families, and the parents turn to these nurses for answersto their questions and concerns. The parents also needed toreceive adequate information, guidance and support fromhealth professionals to make decisions when the child was inthe final stages of life. This was also found by Meyer,Ritholz, Burns, and Truog (2006), Price, Jordan, Prior, andParkes (2011), and Aschenbrenner et al. (2012).

Good quality care based on genuine, positive relationshipswith nursing staff creates confidence among the families. Thiswas also described by Brosig, Pierucci, Kupst, and Leuthner(2007), Browning and Solomon (2005) and Konrad (2008). Atrue relationship is about getting to know one another. Parentsconsidered it positive when staff displayed an interest in themand their children, were compassionate and displayed emotion.Health professionals often hold back their feelings and try toact professionally in emotionally stressful situations to avoidburdening the parents with their own grief. Meyer et al. (2006)and Konrad (2008) found that parents encouraged the staff tobe “real people” and to allow themselves to share theiremotions. In this review, staff memberswhowere unemotionaland disrespectful negatively impacted parents and made themfeel as if the staff were avoiding and abandoning them. This isin agreement with Aschenbrenner et al. (2012). Epelman(2012), who found that health professionals need to understandthat they become emotionally affected, and there must be timeand opportunity to reflect, process and grieve.

Continuity, which was highly valued by the parents in ourreview, supports feelings of security. Indeed, a scenario inwhich health professionals and parents get to know one another

and become emotionally close requires continuity of care.According to Aschenbrenner et al. (2012) this may reducefrustration and enhance comfort and confidence. Although itmay be beneficial for the families to be surrounded by staff thatare known to them, we believe that it can be stressful for healthprofessionals to care for a dying patient during all of their shifts,as it is mentally demanding. At the same time, parentsemphasized that health professionals should respect theirparental role, as they wished to care for their childindependently but needed support to do so.

The parents in our review described alleviation of thechild's suffering as important and pointed to the role ofhealth professionals in this regard. They felt very distressedand frustrated when the child suffered from physical andpsychological symptoms, as also found by Hill et al. (2013)and Wolfe et al. (2000). Kreicbergs et al. (2005) concludedthat to reduce care-related long-term stress among parents,the child's physical pain and the moment of death areimportant areas to manage in palliative pediatric care.

In our view, parents are not the only ones who feel thateveryone becomes like a family when a child is admitted to ahospital for a long period of time—staff do too. For thisreason it must be hurtful for parents to sometimes encounterstaff members who withhold information or changetreatment without preparing the child and family. This wasalso found by Hsiao, Evan, and Zeltzer (2007). According toMeyer et al. (2006), receiving information from multiplesources could be problematic for parents. To support theparents in this situation, nurses could be present whenphysicians provide information. In such a scenario, thenurses would have the opportunity to ask the physicianquestions about any uncertainties, and repeat information asneeded to the parents. Lam, Chang, and Morrissey (2006)argued that parents need to consider how involved they wantto be in the child's care, but that the nurses must take moreinitiative to ask if parents need help. Health professionalswho do not show compassion or emotions may beinfluenced by the heavy workload of caring for a dyingchild and shut themselves off, or it could be the display of aprofessional attitude. According to Epelman (2012), healthprofessionals must understand that they will becomeemotionally affected, and there must be time and opportunityto reflect, process and grieve. Healthcare professionals need tocreate time for follow-up, as this may be a positive experiencefor themselves as well as for the family. We believe thatknowledge may help to individualize care and thus contributeto high-quality care. Health professionals should therefore takeparents' concerns and intuitions seriously, trying to maintainopen communication and provide explanations, thus creating asense of security in the process.

Methodological Considerations

This review used an integrative literature design support-ed by Whittemore and Knafl's (2005) method of process

668 C. Melin-Johansson et al.

permitting the inclusion of various methods thus providing amore comprehensive understanding of the subject. Thepapers included were few in number but rich in informationand contributed valuable information. The literature searcheswere comprehensive and used clear strategies. To minimizethe risk of missing relevant papers, several databases wereused with comprehensive keywords in different combina-tions. To obtain the broadest possible search results, no timelimits were imposed. Quality assessment was performed,resulting in a decision to only include papers of high ormedium quality to enhance reliability and credibility,affecting the final outcome of the synthesis.

Future research should involve qualitative research toachieve a deeper understanding about dying children andtheir families' experiences of pediatric palliative end-of-lifecare, especially concerning existing support provided andexistential/spiritual needs. There is also a need forrandomized controlled educational intervention studiesdirected at health care professionals caring for children atthe end-of-life and at families in regard to how to go aboutencountering their existential/spiritual questions about lifeand death.

Conclusion

Research about parents' experiences of palliative carewhen a child in the family is dying or has died due to illness,is limited. Parents have positive experiences of pediatricpalliative care, but require that the communication betweenthem and nursing staff, and between the child and nursingstaff, must be open and honest. Palliative care for a childmust be provided by professionals who become familiar tothe family, and parents should be included in the care of theirchild so that they do not feel a loss of control. Healthprofessionals in pediatric care must understand the impor-tance of dealing with the child as a unique person with aunique diagnosis, relieving the child's suffering andadapting care. They should be able to talk about death anddealing with grief, and have knowledge and training inpalliative care. Ultimately, health professionals needtraining in how to discuss existential questions raised byparents or the dying child.

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