Seminars in Oncology Nursing, Vol 28, No 4 (November), 2012: pp 213-220 213

THE CHALLENGE OF QUALITY

CARE FOR FAMILY CAREGIVERS

IN PEDIATRIC CANCER CARE

BARBARA L. JONES

Barbara L.

University of

Austin, TX; C

and Family S

Address co

MSW, The Ins

University of

OBJECTIVES: To discuss the needs and potential interventions for parental

caregivers of children with cancer.

DATA SOURCES: Published articles between 2002 and 2012.

CONCLUSION: In general, parents do adjust and cope with their child’s cancer,

but a significantmajority experience post-traumatic stress symptoms. Families

also report that the shift to parenting a child with cancer is very disruptive to

identity and family structure and can cause negative outcomes for mothers,

father, and siblings. There is growing evidence of post-traumatic growth and

resilience in parents of children with cancer. Recent studies have suggested

that targeted interventions may relieve distress.

IMPLICATIONS FOR NURSING PRACTICE: Nurses can support families in the

difficult transition to having a child with cancer and may be able to

intervene to reduce long-term distress in families.

KEY WORDS: Children with cancer, parental caregiving, post-traumatic

stress, resilience

‘‘You feel like you lose all control over your

life. It’s no longer your own.’’

Parent1

CANCER in childhood is rare compared withcancers of adulthood, and represents only 1% ofthe total cancer diagnoses.2 Each year, there are

Jones, PhD, MSW: Associate Professor,

Texas at Austin School of Social Work,

o-Director, The Institute for Grief, Loss

urvival, Austin, TX.

rrespondence to Barbara L. Jones, PhD,

titute for Grief, Loss and Family Survival,

Texas at Austin School of Social Work,

approximately 12,060 new diagnoses of cancer inchildhood.2 With recent medical advances, over83% of children diagnosed with cancer today willbe long-term survivors.2 While diagnoses rateshave declined and survival rates have increasedin recent years, childhood cancer is still the

The Institute for Grief, Loss and Family Survival,

1925 San Jacinto Blvd, Stop D3500, Austin, TX

78712-1405. e-mail: barbarajones@mail.utexas.edu

� 2012 Elsevier Inc. All rights reserved.

0749-2081/2804-$36.00/0.

http://dx.doi.org/10.1016/j.soncn.2012.09.003

214 B.L. JONES

second leading cause of death in childhood.2 Andregardless of prognosis or outcome, each diagnosishas a significant impact on the child, their family,and their community. This article will discuss theimpact of childhood cancer on parental familycaregivers and the implications for interventionsto relieve distress in this population.

CANCER IN CHILDHOOD AND ITS IMPACT ON THE

FAMILY

When a child is diagnosed with cancer, theentire family is diagnosed. Cancer in childhoodcan impact quality of life, mental and physicalhealth, activities of daily living, family dynamics,identity formation, parental and sibling role, aswell as sense of meaning and spirituality.3-8

From the moment of diagnosis, the entire familyis catapulted into a new reality that is both threat-ening and confusing. The child and their entireextended family enter a contract with uncertaintyabout prognosis, treatment, outcome, and impact.Emotional reactions for the family can includefear, disbelief, anger, anxiety, confusion, hope,concern, and shock.9 Cancer in childhood canimpact the family in a number of practicaldomains, including disruption to the family equi-librium, challenges to coping strategies, changesin roles, incongruent or opposing family memberreactions, and financial and support system chal-lenges. There is risk of potential adverse outcomesfor families of children with cancer, such as post-traumatic reactions, anxiety, depression, financialdistress, marital/partner or familial discord, socialand behavioral problems for the child and/ortheir siblings, and prolonged and complicatedmourning.9-11

For many families, the diagnosis of cancer isexperienced as a trauma and may later causepost-traumatic stress reactions.3,12 Recent studieshave shown that a majority of parents of newlydiagnosed children show symptoms of acutestress, with 40% of fathers and more than 50% ofmothers meeting the criteria for acute stressdisorder.12 Because almost all parents in one studyreported symptoms of acute stress (re-experi-encing, arousal, and avoidance), it can be seen asa normative response to a life-threatening diag-nosis.12 However, most families will adjust to thetrauma, engage their previous coping strategies,and integrate the experience of their child’s illnessinto their life experiences.13

Despite the high rates of distress, families alsodemonstrate optimism, resilience, and positiveoutlook in the face of their child’s cancer diag-nosis. These traits have been shown to correlatewith increased life satisfaction, positive healthperception, and decreased anxiety and depres-sion.14,15 Some studies are showing that the care-giving role itself may have a mediating impact onthe traumatic impact.16-18 Because the parentalrole is inherently a caregiving role, a cancer diag-nosis multiplies the caregiving demands ofparents. Parents still maintain all of their othercaregiving responsibilities, and must now adjustto these new, complicated, and critically impor-tant responsibilities. However, because parentswant to protect and nurture their child, caregivingopportunities may reduce their suffering and miti-gate distress.9

While caring for a child with cancer presentsextreme challenges to the parent, there isevidence that some parents may also experiencepost-traumatic growth in caring for their child.In a cross-sectional survey of 273 parent care-givers of children with life-limiting illnessesthroughout Canada and the United States, Cadellet al14 found evidence of both caregiver burdenand growth. Overall, participants expressedgrowth through caregiving as evidenced by thePost-traumatic Growth Inventory. As meaning incaregiving, self-esteem, and spirituality scoreswent up, so did post-traumatic growth scores.14

Similarly, as depression scores went up, so didcaregiver burden; as depression scores went up,meaning in caregiving and spirituality scoreswent down; and when burden went up, self-esteem and optimism decreased.14 Overall, thismay indicate that post-traumatic growth forparent caregivers is possible, but is mitigated bycaregiver burden and depression. Parents in thisstudy indicated the importance of becoming anadvocate for their child and connecting with otherparents.14 Parents also noted that there is a lack ofsupport for siblings, and that siblings still desiremore information and support from health careproviders.14

EXPECTATIONS OF FAMILY CAREGIVERS/

PARENTAL CAREGIVING DILEMMA AND ROLE

CONFLICT

Because cancer is so rare and unexpected inchildhood, there is no preparation for the role of

QUALITY CARE FOR FAMILY CAREGIVERS IN PEDIATRIC CANCER CARE 215

the parent (or grandparent or sibling) of a childwith cancer. During the initial diagnosis period,the family, especially the parents, must adjust tothis identity and role shift. Sometimes this iden-tity transition begins before diagnosis (parentsmay have suspected that their child was not welland may have brought her/him to multiple doctorsbefore actually receiving the oncology diagnosis).This initial period of uncertainty and potentialdelays or misdiagnoses can also impact the care-giving role. In addition to the parental nurturingprovided when a child is well, parents of childrenwith cancer often discover that they must becomeadvocates, counselors, and medical technicians inthis new role.

Expectations of family caregivers of childrenwith cancer are quite high. The oncology teamexpects parents to quickly learn and adhere torigorous treatment protocols that often involvefrequent medical appointments and/or lengthyhospital stays. Parents typically deliver home-based high-tech medical care that is often compli-cated and invasive. Parents become trained toidentify and respond to severe and distressingside effects of treatments that can include nausea,vomiting, pain, sleeplessness, changes in attitude,mood, behavior, eating and sleeping patterns, feverand neutropenia, distress, and suffering. Parentsare sometimes asked to help the medical team bygetting their child to comply and cooperate withinvasive procedures. The role of ‘‘caregiver’’ asdefined by the medical team is often at odds withthe definition of ‘‘caregiver’’ in parental terms.The parental caregiver dilemma involves parentshaving to provide care that is often painful andfrightening to the child while simultaneouslydesiring to explain, hold, nurture, comfort, protect,and help their child avoid suffering and pain.

Families of children with cancer may providemedical, emotional, financial, spiritual, or phys-ical caregiving, or more likely a combination ofall of these.6 Medical caregiving involves themanagement of treatment, hospital stays, clinicvisits, home care, and any number of othertreatment-related tasks. The context of thiscaregiving can be quite emotionally taxing, asdescribed by this mother.

‘‘Every four or five days, we had to sterilize

the place where the catheter went into Forr-est’s body. The hole for the catheter was

right beside his heart. Infection there would

kill him quickly. We were shown how to

clean the catheter site within the first few

days of his diagnosis. One of our nursesdemonstrated using a plastic toddler doll.

But the doll didn’t squirm. The doll didn’t

feel any pain. As I watched her, I knew

our experience was going to be a whole

different story.’’ 19

Parents report that the most frequent negativeeffect from parental caregiving is on their physicaland emotional health.1 Parents indicate that thetypes of assistance that are most beneficial tothem include respite from direct caregiving and re-lief from other responsibilities so they may focuson the child.1 According to parents in one survey,the most helpful forms of assistance to relievecaregiver burden include timely education abouttheir child’s health status from health careproviders and emotional support from familymembers, friends, and others.1

FACTORS THAT INFLUENCE FAMILY CAREGIVING

AND PARENTAL WELL-BEING

A number of demographic and personal factorsmay influence caregiving and parental well-being. First and foremost are the family structure,cultural and spiritual background, and history ofillness and loss. There are a variety of family struc-tures that exist, including multigenerational fami-lies, single-parent families, same-sex parentfamilies, foster families, adoptive families, immi-grant or noncitizen families, and families sepa-rated by distance, divorce, or separation. Each ofthese family constellations may have uniqueneeds and potential barriers in the health caresystem. In addition to entering the medical systemand trying to adjust to the emotional trauma,many families also contend with fears that theproviders may not recognize their unique familystructure.In addition to family structure, culture and reli-

gious/spiritual background can impact familialcaregiving roles and expectations. How a familycaregiver interprets the diagnosis of cancer andthe caregiving role will be greatly influenced bycultural beliefs of illness, health, wellness, anddeath. In the interactions in health care, thereare a number of therapeutic elements that canbe influenced by culture, including trust ormistrust, especially in communities that havebeen disenfranchised or experienced discrimina-tion in society. It is well-documented that health

216 B.L. JONES

disparities exist in oncology treatment that impactboth diagnosis and prognosis specifically forLatino and African American patients. Any historyof cultural mistrust or language and culturalbarriers may influence how the family receivesinformation about the child’s diagnosis and aboutthe proposed treatment protocol. Even seekinga diagnosis and receiving help, both medical andpsychosocial, are greatly influenced by culturalexpectations. Spiritual and religious beliefs alsoplay a role in how parents and families enter intothe health care system and approach the role ofcaregiver. Socioeconomic status and insurancestatus may also impact the child’s access to careand the family’s expectations and interactionswith the health care team. Finally, a history ofconcurrent or prior losses, especially cancer-related, may cause the family to feel a greatersense of anxiety and despair or hope and compe-tence upon news of a cancer diagnosis.

Gender and role expectations can impact whoprovides the majority of physical and/or emotionalcaregiving to the child. While there are manyfamily structures and a variety of appropriate care-giving roles for both fathers andmothers, it appearsthat there are some unique challenges for each. Intwo-parent families, one parent often remains inthe hospital to care for the child while the othermaintains the financial caregiving responsibilities.In many, but certainly not all families, the motheris at the bedside while the father returns to work.The challenges for fathers are different thanmothers. This creates unique challenges for eachparent. Mothers report the emotional work of care-giving as intense and complex.18 Fathers reportfeeling distant and uninformed about the careand treatment of their child.20

Siblings of children with cancer experiencegreater distress at the time of diagnosis and doreport a senseof losing parental attention and senseof status in the family.21 Some siblings also reportpost-traumatic stress symptoms, poor quality oflife, and negative emotional reactions.21 Siblingsalso show positive outcomes, such as increasedcapacity for empathy and psychological matu-rity.21 Parent caregivers worry about their childwith cancer and about their well children; theseconcerns add to their parental caregiving stress.

CAREGIVING WHEN CURE IS NOT LIKELY

When cure is not likely, parents have tremen-dous fear that their child will suffer emotionally

or physically and often worry that they may notbe able to provide the support necessary. Andyet, children may guide their parents in the diffi-cult and crucial conversations about death andlife as exemplified in this exchange:

‘‘Am I going to die, Mommy?

Yes. Forrest, everybody dies sometime.Do you know when?

No..do you?

I was thinking Friday.

Friday? That’s a bit soon, don’t you think?

Well when I die, I’ll miss you and you’ll

miss me

and I’ll miss Daddy and Daddy’ll miss

me.Can we listen to Blue’s Clues now?’’

-Forrest, age 319

When a child is facing the end of life, parentalcaregiving takes on additional dimensions thatinvolve balancing the hope for cure with the devas-tating reality that the child may die. Parentscontinue to provide all of the emotional, physical,medical, and spiritual caregiving they have duringthe child’s illness, but now they must also facealmost inconceivable loss and grief. Parents striveto keep the child free from pain and suffering whilesimultaneously managing all of their own andother family member’s emotions. Parents reportthat end-of-life decisions for their child are themost difficult to make.22 As care moves from cura-tive to palliative to end-of-life care, the decision-making suddenly shifts to the parent. Parentsreport feeling overwhelmed and inexperienced tomake these decisions after years of havingdecisions dictated by a structured treatmentprotocol.22,23 Most parents prefer to have informa-tion but make decisions in collaboration with theirhealth care providers.22,23 Many parents want toensure that their child is involved and participa-tory in their own in end-of-life decisions.22,23

Some parents seek spiritual and religious supportduring these decision times, while others mayexperience anger toward God and a rejection ofpreviously held beliefs.4

Recent studies have shown that parents want tobe seen as a ‘‘good parent’’ to their critically ill ordying child.24,25 While the definition of a ‘‘goodparent’’ is individual and personal, it can also besocially influenced.25 This desire to be seen asa ‘‘good parent’’ is a powerful internal motivator ofdecision-making and actions.25 Parents want posi-tive feedback from health care providers that their

TABLE 1.Parents Definition of ‘‘Good Parent’’

� Doing right by my child

� Being there for my child

� Conveying love to my child

� Being a good life example

� Being an advocate for my child

� Letting the Lord lead

� Not allowing suffering

� Making my child healthy

Data from Hinds et al.25

TABLE 2.Clinical Care Strategies that Support Parents in Being

a ‘‘Good Parent’’

� All that can be done is being done

� Staff respect me and my decisions

� Staff continue to comfort my child and me

� Staff know our special needs

� Staff like our child

� Staff are pleasant

� Staff coordinate care

� Staff ask about our faith

� Give us the facts

� Staff tell us we are good parents

� Do not quit on us

� Do not forget us

� Keep including our child

� Provide more material items and support options

� Staff give us time to decide

Data from Hinds et al.25

QUALITY CARE FOR FAMILY CAREGIVERS IN PEDIATRIC CANCER CARE 217

decisions are reflective of their child’s preferencesand that they are still ‘‘good parents.’’25 The parentsin this study provided a clear list of attributes thatdefined what being a ‘‘good parent’’ means (seeTable 1).25 Parents also offered distinct clinicalcare strategies that supported them in beinga ‘‘good parent’’ (see Table 2).25

SURVIVORSHIP AND LONG-TERM CAREGIVING

There are approximately 270,000 childhoodcancer survivors (CCS) in the United States and,given current treatments, children diagnosedtoday have 5-year survival rates exceeding 80%.2

However, CCSs are at risk for long-term effectsof their treatment. These long-term outcomescan include anxiety, depression, post-traumaticdisorder, difficulties in relationships, challengesto fertility, significant physical late effects, andrisks of secondary cancers. The late effects thatchildren experience can influence their long-term caregiving needs. Additionally, research hasshown that families, especially parents andsiblings, are also vulnerable to struggles relatedto having a child or sibling with cancer. The Child-hood Cancer Survivor Study, a long-term retro-spective cohort study of 14, 000 childrendiagnosed between 1970 and 1986, has demon-strated that survivors are at risk for negative lateeffects in the following categories: social, behav-ioral, psychological, and medical outcomes. Ac-cording to this study, CCSs are at risk for socialoutcomes, such as poor educational attainment,less than optimal employment status, and inter-personal relationship issues.26 Overall, most survi-vors are psychologically healthy and satisfied withlife.27 However, certain groups of CCSs are athigher risk, especially brain tumor survivors.

Risk factors for poor health-related quality of lifeand psychological distress include being female,unmarried, having low educational attainment,having an annual income of less than $20,000 orbeing unemployed, lacking health insurance, pres-ence of a major medical condition, and a historytreatment with cranial radiation or surgery.27

The presence of psychological distress in CCSpredicts poor health behaviors, such as smokingand alcohol or other use, which can put them athigher risk of further health problems.27 Thosewho rate their health as poor have increases indepression, anxiety, and somatic distress.27

Survivors report concerns about their physicalhealth and relapse, body image, and self-concept.27 Survivors also worry about adequateaccess to insurance, and about their future jobsand careers.27 Fatigue and psychological distressare significant for a sub set of CCS: women, thosewho are unemployed or have low income, andthose struggling with delayed or late effects ofcancer therapy.27

Survivors of childhood cancer are more likelythan their siblings to have symptoms of depressionand anxiety.28 Specifically, adolescents treated forleukemia or CNS tumors show increased scores indepression/anxiety, attention deficit, and antiso-cial domains.28 Survivors of neuroblastoma showan increase in depression/anxiety and antisocialdomains, and treatment with cranial radiation orintrathecal methotrexate are specific risk factorsfor these negative outcomes.28

218 B.L. JONES

Approximately 16% of CCS show symptomsof Post-traumatic Stress Disorder (PTSD) orPost-traumatic Stress Syndrome (PTSS).29 Mostsurvivors report symptoms of re-experiencingtraumatic aspects of their treatment.29 Survivorswith PTSD report more psychological problemsand negative beliefs about illness.29 For young-adult survivors of childhood cancer, PTSD is fourtimes greater compared with siblings.30 It maybe that symptoms emerge as they deal with devel-opmental tasks of young adulthood. Predictors ofPTSD in young-adult survivors include intensityof treatment and receiving cranial radiotherapyat younger ages.30 Lower education, employment,and income levels, and being unmarried have alsobeen shown to increase the risk of PTSD.30

Rates of PTSD in families of CCS range between5% and 25%, with higher rates when includingPTSS.31,32 Rates of PTSD/PTSS are higher thanthose who never had a child with cancer, with99% of families reporting one parent who meetsthe PTSD criteria of re-experiencing; 20% have atleast one parent with current PTSD.31,32 Oneintervention that has shown efficacy in reducingPTSD and Acute Stress Disorder in families ofnewly diagnosed children is the Surviving CancerCompetently Intervention Program–Newly Diag-nosed (SCCIP-ND), which uses a three-sessionintervention with three booster sessions. Thisintervention focuses on identifying caregiverbeliefs about cancer and its impact, changingbeliefs to enhance family functioning, andfocusing on family growth and future goals.32,33

PSYCHOSOCIAL INTERVENTIONS

Interventions for family caregivers of childrenwith cancer are beginning to be developed andtested for efficacy. In practice, pediatric oncologysocial workers, nurses, psychologists, and otherhealth care providers have always offered psycho-social support, counseling, referral, and interven-tion to children with cancer and their families.However, in recent years, studies are being devel-oped that hint at an evidence base for psycholog-ical interventions for families. Kazak31 found thatthe empirical evidence in psychosocial supportof family caregivers has grown in the past fewdecades, and has focused on four key areas:1) understanding procedural pain; 2) realizinglong-term consequences; 3) appreciating distressat diagnosis and over time; and 4) knowing theimportance of social relationships.

In a recent meta-analysis of randomizedcontrolled trials in pediatric oncology caregiverintervention research, Northouse et al34 foundthat in 29 clinical trials between 1983 and 2009,family caregivers received psycho-educationalskills training and therapeutic counseling. Mostinterventions were delivered to caregivers inconjunction with their children, and most care-givers studied were female (64%) and Caucasian(84%).34 The simultaneous intervention mayreflect the reality of parental caregiving in pediat-rics, such that parents are usually present withtheir child. The demographics are consistentwith other studies and do present the obviousneed for increased research with fathers andethnic minorities.In this same analysis, Northouse et al34 reported

that the interventions, while small in effect, didseem to increase caregiver quality of life, coping,and self-efficacy, and reduced burden. Otherrecent studies since have demonstrated efficacyin the reduction of depression, anxiety, andPTSD, and improvement of well-being, hardiness,and mood, utilizing a range of interventionsincluding problem-solving, psycho-education,reflection, care planning, information andsupport.33,35-38 SeeNorthouse et al34 for anexhaus-tive listing of studies in the past two decades.While intervention research for family care-

givers of pediatric patients is growing, more isneeded to understand how best to support fami-lies facing the diagnosis, treatment, and survivor-ship of their child. Particularly understudied areethnic minorities, fathers, and diverse familystructures, such as same-sex, single, or foster/adoptive families. Also, more research is neededin pediatric palliative care and long-termsurvivorship.6,27

PARENT CAREGIVERS AND FUTURE DIRECTIONS

Parents want to provide the best care possiblefor their child but face incredible stress andburden as they attempt to do so. Parents want tomake decisions that will both help their childand reinforce their perception of themselves asa ‘‘good parent.’’ Decision-making must be sharedbetween parents and providers to best supportboth parents and children, especially at the endof life. Parents undergo an identity transitionwhen becoming the parent of a child with cancer,which often involves being an advocate for theirchild beginning at diagnosis. Parents want to

QUALITY CARE FOR FAMILY CAREGIVERS IN PEDIATRIC CANCER CARE 219

receive comprehensive information from theirhealth care team and want to be listened to and re-spected throughout the treatment process andbeyond. There is evidence that families experi-ence both burden and growth as they care for theirchild with cancer. Siblings are particularly under-studied and may experience long-term negativeeffects of having a brother or sister with cancer.

There is a need for both practice-informedresearch and research-based practice in care forfamily caregivers of children with cancer. Specifi-cally, research is needed that focuses on under-studied and vulnerable groups (such as families of

childrenwithbrain tumors, economicallydisadvan-taged, ethnic or spiritual minorities, diverse familystructures, fathers, and children and families whoare facing end-of-life or long-term survival).6,20,31,34

Parental caregivers of children with cancerexperience significant caregiver burden anddistress while caring for their sick child and tryingto maintain family equilibrium. Families alsodemonstrate incredible resilience and potentialfor positive growth in the face of their children’sillness. Health care practitioners need to offerevidence-based strategies that have the potentialto foster family resilience and quality of life.

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