Bergsträsser, Eva

RERO DOC Digital Library

EDITORIALChildhood cancer—are there predictors of parental well-being?Eva BergsträsserReceived: 29 March 2007 /Accepted: 4 April 2007 / Published online: 28 April 2007# Springer-Verlag 2007Childhood cancer is one of the most threatening diagnosesfamilies can be confronted with. As in adulthood, thediagnosis of cancer is directly associated with the idea ofsuffering and death. Cancer is a metaphor for death thatmight never be eradicated irrespective of rising survivalcurves, especially in childhood cancer.Nevertheless, parents who are confronted with thediagnosis of cancer of their loved child will enter a processof coping. This process has also been called the “unex-pected career” [1]. This expression is well deserved, as itacknowledges the tremendous commitment and competencethat parents have who care for their child with cancer.However, it is well known that cancer affects the wholefamily and other systems connected with the patient and thefamily. This is a particular issue in pediatric oncology whereit includes parents and siblings. One answer to this long-standing awareness can be found in the well-establishedpsychosocial support, which has become an integral part ofcomprehensive cancer care.In the pediatric oncology literature, many studies havefocused the effects of childhood cancer on parents. Amultitude of studies has made valuable contributions toparental coping in childhood cancer. The complexity of stressand coping related to childhood cancer emerges through suchstudies [2, 3]; however, many aspects remain unclear. Westill only partially understand the inter-relationships ofdifferent factors relevant to the caregiving process. Besidesthe clinician’s open eyes and mind, a better understanding ofthe caregiving stress and process of coping or evenpredictors of parental well-being would be a requirementfor better care of both patient and family.In the same context as Lazarus and Folkman [4], onecould approach this problem by thinking about thetheoretical background of stress and coping. It appears thatthis was the underlying rationale for the approach chosenby Klassen et al. [5]. Their study, published in this issue, isdirected at the wide variation of psychological adjustmentsof parents caring for a child with cancer. The authorsconducted a systematic review of the literature to identifythe main factors previously described to explain thisvariability. A selection of 48 articles was incorporated in amultidimensional caregiving model—the Caregiving Pro-cess and Caregiver Burden Model, previously published byRaina et al. [6] from McMaster University Hamilton,Ontario. This theoretical model was originally developedto obtain a more complete picture of caregiving for childrenwith developmental disabilities. Klassen, Raina, and co-workers modified the model to study parental caregivers ina different setting of health problems. In the given contextof childhood cancer, six constructs were included asoutcome variables: background/context variables, childcharacteristics, caregiver strain, self-perception, copingfactors, and caregiver’s physical and psychological health.The results show that poorer caregiver psychological healthwas associated with child characteristics, such as behaviorproblems, depression, emotional, or somatic distress. As iscommonly experienced in daily clinical practice, time couldheal at least some of the wounds (measured as time sincediagnosis). In addition, the condition and prognosis of thechild played an important role in the well-being of parents.In this context, it is unfortunate that different cancer entitieshave not been specified. I would speculate that parents ofchildren with brain tumors have poorer outcomes comparedto those with children suffering from other solid tumors,Support Care Cancer (2007) 15:799–800DOI 10.1007/s00520-007-0257-4E. Bergsträsser (*)Paediatric Oncology, University Children’s Hospital,Steinwiesstrasse 75, 8032 Zurich, Switzerlande-mail: eva.bergstraesser@kispi.unizh.chsuch as nephroblastoma or non-high-risk leukemia. A morerecent study that focused on time since diagnosis and typesof cancer evaluated children and adolescents with newlydiagnosed cancer. Interestingly, it could be shown that6 weeks after diagnosis, children with leukemia were themost affected in the majority of dimensions of health-related quality of life (HRQL), and 1 year after diagnosis,children with brain tumors seemed to be the most affected[7]. Surprisingly, Klassen et al. found no evidence for therelationship between socioeconomic status and caregiverstrain as has been shown by Sloper [3].Considering time since diagnosis, it may also be interestingto evaluate the long-term outcomes of these families affectedby childhood cancer. Symptoms of post-traumatic stressdisorder (PTSD) have been reported in former pediatriccancer patients and are even more accentuated in their parentsin a frequency of up to 50% [8–10]. The development ofPTSD is comparable to the experience of pain. In pain, thestimulus of pain does not predict the individually perceivedpain and outcome of pain, e.g., the development of chronicpain. Similarly, the amount of stress received by a parent inthe context of childhood cancer does not necessarilycorrelate to the mother or father’s real suffering or the riskto develop PTSD. Furthermore, timing of traumatic stressdoes not correlate with the time of development ofsymptoms of PTSD.An important question is whether PTSD in survivors andfamilies can be diminished. Kazak et al. [8] have performeda randomized clinical trial of a family intervention[Surviving Cancer Competently Intervention Program(SCCIP)] integrating cognitive–behavioral and family sys-tem approaches to aim a reduction of PTSD or posttrau-matic stress symptoms (PTSS). One hundred fifty familiesparticipated 1 to 12 years after completion of cancertreatment. Families randomized to the treatment groupreceived the intervention 4 to 6 months after baseline datacollection, and reevaluation took place 3 to 5 months afterintervention. The intervention consisted of a four-session,1-day program, whereas the control group remainedwithout intervention until the time of reevaluation whenintervention was offered to the participants. PTSS scores,especially intrusive thoughts among fathers and arousalamong survivors, were decreased in the intervention group,irrespective of time since treatment ended. Interestingly, nosignificant effects were found for mothers. Thus, it hadbeen concluded that brief interventions focused on specificaspects of medical trauma would be warranted.As a pediatric oncologist, I wish to formulate a vision.Given the fact that the majority of children with cancer canbe cured of their disease, we should further focus to reachthe aim of a “truly cured child,” as this had been formulatedby Jan van Eys in 1977 [11]. As a “truly cured child” isstrongly associated to its family, cure includes the familyand is meant as a psychosocial cure. To reach this goalgiven the scarce resources, it will be necessary to considerthe true needs for interventions and support in even moresophisticated concepts of psychosocial, family-based pedi-atric cancer care of the future. The paper of Klassen et al.may become one of the valuable milestones for furtherresearch in this field.References1. Aneshensel CS, Pearlin LI, Mullan JT, Zarit SH, Whitlatch CJ(1995) Profiles in caregiving: the unexpected career. Academic,San Diego2. Van Dongen-Melman JEWM, Van Zuuren FJ, Verhulst FC (2000)Experiences of parents of childhood cancer survivors: a qualitativeanalysis. Patient Educ Couns 34:185–2003. Sloper P (2000) Predictors of distress in parents of children withcancer. A prospective study. J Pediatr Psychol 25(2):79–914. Lazarus RS, Folkman S (1984) Stress, appraisal, and coping.Springer, New York5. Klassen A, Raina P, Reineking S, Dix D, Pritchard S, O’Donnell M(2007) Developing a literature base to understand the caregivingexperience of parents of children with cancer. A systematic reviewof factors related to parental health and well-being. Support CareCancer (in press). DOI 10.1007/s00520-007-0243-x6. Raina P, O’Donnell M, Schwellnus H, Rosenbaum P, King G,Brehaut J, Russell D, Swinton M, King S, Wong M, Walter SD,Wood E (2004) Caregiving process and caregiver burden:Conceptual models to guide research and practice. BMC Pediat-rics 4:1–137. Landolt MA, Vollrath M, Niggli FK, Gnehm HE, Sennhauser FH(2006) Health-related quality of life in cildren with newlydiagnosed cancer: a one year follow-up study. Health Qual LifeOutcomes 4:638. Kazak AE, Alderfer MA, Streisand R, Simms S, Rourke MT,Barakat LP, Gallagher P, Cnaan A (2004) Treatment of posttrau-matic stress symptoms in adolescent survivors of childhoodcancer and their families: a randomized clinical trial. J FamPsychol 18(3):493–5049. Landolt MA, Boehler U, Schwager C, Schallberger U, Nuessli R(1998) Post-traumatic stress disorder in paediatric patients andtheir parents: an exploratory study. J Paediatr Child Health34:539–54310. Kazak AE (2005) Evidence-based interventions for survivors ofchildhood cancer and their families. J Pediatr Psychol 30(1):29–3911. Van Eys J (1985) Caring toward cure. Child Health Care 13(4):160–166800 Support Care Cancer (2007) 15:799–800

Childhood cancer—are there predictors of parental well-being?

http://doc.rero.ch/record/320581/files/520_2007_Article_257.pdf

Childhood cancer—are there predictors of parental well-being?

Abstract

Similar works

Full text

Available Versions

RERO DOC Digital Library