3245

Introduction to Psychosocial Issues

In this introduction I want to lay the groundwork for nation of the professions, the medical and psychologi-
our discussions by indicating some current problems in cal professions included, is to emphasize an approach
diagnostic, treatment, and follow-up care in childhood to life crises that justifies and requires specialized pro-
cancer. Moreover, I want to identify some priority fessional resources. As life problems become “profes-
needs for expanded research and service. The work- sionalized’ rather than “normalized,” we look for signs
shop presentations and deliberations will no doubt ex- of pathology rather than health, often overemphasizing
tend and perhaps challenge some of these introductory them and designing “treatment plans” (another pathol-
remarks, but that indeed is our purpose in these few ogy-oriented term-why not “response patterns?”) on
days. the assumption of the latter. In the case of psychosocial
concerns attendant on childhood cancer, this approach
Overview not only leads to poor diagnostic assumptions (and as-
sessment failures), but sends a message to patients and
The treatment of childhood cancer has in many ways, family members that often is disempowering, frighten-
both physiological and psychosocial, pioneered treat- ing, and may well create the very problems we seek to
ment paradigms for many other forms of cancer. In fact, avoid.
our researchers, medical care providers, and patients Second, much psychosocial care is not conceptual-
have been the ones to meaningfully introduce cancer as ized or provided on a holistic basis. That is, we too often
a ”family disease” into the vocabulary. Despite these isolate the child from the family (from parents and sib-
trailblazing efforts, and despite major advances in both lings and grandparents), and treat the child’s psychoso-
medical and psychosocial care over several decades, six cial status and concerns without either attending to the
major problems in psychosocial care remain. family’s concerns or seeing the child in the context of
First, many efforts to provide psychosocial care, family dynamics. Moreover, even when the family is
and to innovate new forms of care, still proceed from a conceptualized and treated as a psychosocial unit, we
“pathology” model rather than a ”health” model. Most all too often abstract the family from its community and
families entering into the world of childhood cancer are neighborhood enmeshment. None of us survives alone,
reasonably healthy in psychosocial terms. They are not apart from our familial connections; and none of our
”problem families,” and seldom need psychotherapy. families survive healthfully alone, apart from other kith
Rather, they are relatively normal people and families and kin relations. We must plan and deliver psychoso-
experiencing a major long-term trauma in their lives. cial care in ways that deal with the entire social unit of
Supportive care of various kinds, delivered in ways that the family-the extended family and friendship rela-
respect family health, and that seek to prevent pathol- tions, and neighborhood or community contacts.
ogy, is what is needed. Unfortunately, the natural incli- Third, psychosocial care seldom is offered on an
integrated basis. That is, physicians and nurses may
deal intimately with the family in the clinic or on the
Presented at the American Cancer Society Workshop on Chil- wards and then refer families for counseling to a
dren with Cancer, Naples, Florida, September 5-6, 1991. stranger, perhaps a social worker in another office in
From the Department of Sociology, University of Michigan,
Ann Arbor, Michigan.
another part of the hospital. One part of this treatment
In outlining the areas of need and concern, the author is in- system may never follow up on another part, with the
debted to the American Cancer Society-sponsored Consensus Confer- result often being a lack of shared information and coor-
ence, ”Psycho-social Support Needs for Children with Cancer,” dination. Comprehensive assessment or treatment
chaired by J. van Eys, M.D., and conducted at the University of Texas plans seldom are designed and implemented, and fami-
M. D. Anderson Cancer Center, 1988.
Address for reprints: Mark A. Cheder, Ph.D., University of
lies often are shunted from office to office, from profes-
Michigan, 4016 LSA Building, Ann Arbor, MI 48109-1382. sional to professional, picking up bits and pieces of med-
Accepted for publication May 21, 1992. ical information, psychological insight, social support,
3246 CANCER Supplement M a y 25, 1993, Volume 71, No. 10

and promises of help along the way. This is especially tions and people of color, especially, such care often is
likely in large comprehensive childhood cancer treat- unavailable, fragmented, and poorly provided if at all.
ment centers, those institutions most familiar to most of Figure 1presents a visual map of the several catego-
us at this workshop. This problem is due partly to a ries of people affected by childhood cancer, involved
conceptual failure in the health care delivery system with the patient and family, and potentially beneficia-
and partly to a general lack of coordination among med- ries of meaningful research and service efforts aimed at
ical and psychosocial specialists in large technical comprehensive psychosocial care. We have chosen, in
bureaucracies. the limited context of this workshop, to focus initially
Fourth, psychosocial services seldom are provided on five central areas of concern: 1)the patient’s psycho-
over time and designed to work with a patient and fam- social health and needs; 2) the family’s needs and re-
ily through the varied stages of medical treatment and sources and the local community setting; 3) the school
psychosocial progress. The financial and staffing prob- setting and role; 4) the staffs role and impact on patient
lems affecting many hospitals apparently make it infea- and family; and 5) terminal and bereavement care is-
sible to follow patients and families over time if and sues. We know that there is considerable overlap
when they do not present “psychosocial problems.” among these foci, and that discussion during the work-
These constraints certainly make it difficult to conduct shop may generate other areas of concern.
aggressive psychosocial outreach programs to families
who do not present themselves. This approach to care is Areas of Psychosocial Need and Concern
in marked contrast to the outreach and follow-up char-
acteristic of the medical treatment of childhood cancer,
Patients
where national research programs, local registries, na- In the care of the patient, prevention of adverse psy-
tional protocols, and even court cases take a very asser- chosocial consequences of disease and therapy, or at
tive outreach stance toward treatment over time. least minimalization of these consequences, must be rec-
Fifth, the psychosocial programs that are available ognized as an important criterion of treatment success.
may indeed be responsive to patient and parental con- Some of these adverse consequences may be brought
cerns, but they seldom seek to empower patients and about by the physical nature of the disease and treat-
family members. Seldom are patients and families in- ment, but others may evolve from the psychological
volved as partners in the design and guidance or man- trauma or pain of the disease and treatment, the fear
agement of these programs, and there often is substan-
tial resistance on the part of medical and psychosocial
practitioners to the notion of assertive and empowered
patients and families. Seldom do staffs make an effort
to share control of the treatment process with parents
and patients-knowledge of treatment decisions, yes;
involvement in treatment decisions, yes; but that is as / \
far as a partnership goes ordinarily. This concern is seen
in bold relief in efforts at organized and collective par-
ent involvement in the clinic or medical system; most
facilities resist such participation and empowerment,
while continuing to care for and connect to families on
an individual basis. One outcome of this dynamic is
that many collective parental-family efforts to play a
helpful role in the life of the medical care system treat-
ing their children (e.g., parent advocates/representa-
tives on staff ), or in the supportive care of other families
(e.g., parent visitor or cocounseling arrangements) tend
to be organized outside of the medical system.
A sixth problem is that many of the psychosocial
/
services we know to be important, the above debates
and difficulties notwithstanding, simply are not avail-
able to many patients and their families. In small com-
Figure 1. The widespread impact of childhood cancer. Reprinted
munity hospitals and clinics, in impoverished and op- with permission from Chesler M. Community support systems. In:
pressed communities, in financially pressed medical Dowel1 R, Copeland D, van Eys J, editors. The child with cancer in
centers, and in hospitals or clinics serving poor popula- the community. Springfield, IL: Charles C. Thomas, 1988:35.
Introduction to Psychosocial IssueslChesZer 3247

and worry accompanying uncertainty about the future, entire family is an important issue in and of itself. For
and the stigmatizing impact of reactions from the exter- both these reasons the entire family (parents, siblings,
nal social environment. Moreover, latest research indi- grandparents, and, for all we know, pets) should be
cates that many survivors of childhood cancer reflect involved in psychosocial assessment, support, care, and
positively on the changes and growth they have made services.
in their lives as a consequence of positive coping with For parents as well as for children, many psychoso-
the disease. This may sound like a “pollyannish” per- cia1 stresses attend this illness and its treatment, and
spective, but it is too strong and consistent a finding to Table 1 presents our own conceptualization of these
be dismissed. Thus, the encouragement of positive gain, stresses and their resultant coping tasks or challenges.
not just the prevention of negative outcomes, should be Once again, assessment, a range of differentiated and
our goal. responsive programs, and continuing provision of ho-
Optimal psychosocial (or medical) care cannot be listic, integrated, and empowering care is vital. Since
delivered unless a supportive and knowledgeable as- some of the unique wisdom regarding childhood cancer
sessment plan exists. All patients differ, and the nature is not in the hands of recognized professional experts,
of these individual differences in capacities, skills, but is lodged in the experiential expertise of veteran
needs, and psychological styles means that any set of parents, local Candlelighter groups become an espe-
psychosocial support principles needs to be tuned to the cially important resource. Such groups are a key link in
individual patient. For instance, we know that many parents’ efforts at self-care, self-empowerment, devel-
young people have an enormous and often unsatisfied opment of new and helpful social bonds, and active
desire for medical information, and the staff must be roles vis-a-vis the medical care system. How local hospi-
prepared to provide (and reprovide and reprovide) such tal-clinics find, facilitate, respond to, and work with
information at an age-appropriate level (incidentally, such groups is a matter of continuing negotiation, but
this often means at a level far in advance of what the an important task nonetheless. In some medical sys-
staff currently thinks is age-appropriate). Professional tems parent self-help and support groups have been
guidance and support should be available to patients welcomed as useful complements to the professional
from the outset, and opportunities for special interven- care provided by the staff-and as resources the staff
tions (e.g., cognitive/behavioral treatment of anticipa- itself can call on for help. In other medical systems the
tory nausea, self-esteem support, role-playing prepara- notion of parent-peer support that is unsupervised or
tion for dealing with family and friends) should be pro- uncontrolled by the staff generates great professional
vided to patients. anxiety and resistance. Families should be encouraged
Personnel involved in creating such a total care en- to seek and test such peer connection and support rou-
vironment and delivery system include physicians, tinely: although formal involvement may not suit the
nurses, social workers, child-life specialists, chaplains, needs of all families, professional encouragement will
psychologists, psychiatrists, patient/parent representa- help inform them about and legitimate these parental
tives, educators, and others with special knowledge and self-help efforts.
resources regarding childhood cancer-all working to- One of the greatest gaps in psychosocial care deliv-
gether, it is hoped, to provide care on holistic and inte- ery to the family concerns siblings. Whether they show
grated bases. up as (extra-) “well behaved” or ”acting out,” siblings
Many children with cancer report that they would have strong and continuing reactions to their brother’s
have liked (or would still like) to talk with other young or sister’s diagnosis and treatment. The focus on caring
people (their age or perhaps a bit older) who have or for the patient in ways that ignore the whole family
have had the kind of disease and treatment they are often leaves siblings bereft and neglected-in the fam-
experiencing. A peer-support system, whether orga- ily, in the research literature, and in the service delivery
nized through the hospital or clinic or through the re- system.
sources of groups such as Candlelighters, would be an We argued at the outset that childhood cancer was
important response to this need. not only a family disease, but that all the people af-
No doubt more will be added to this introduction fected (see Fig. 1)by the illness are at potential risk (they
by colleagues Cincotta and Katz. also all are potential resources), and all should be seen
as potentially involved in programs of psychosocial
The Family and Home Community support and care. Obviously, caring for or mobilizing,
The psychosocial health of the child depends, in part, or even contacting, this extended network is a task well
on the psychosocial health of the family. In addition, beyond the current resources of most medical systems,
since cancer affects the entire family and is now recog- but planning for the needs of friends and extended fam-
nized as a family disease, the psychosocial health of the ily members, neighbors and playmates, local commu-
3248 CANCER Supplement M a y 25, 1993, Volume 71, No. 10

Table 1. Stresses and Coping Strategies for Parents of Children With Cancer
Categories of stress Coping strategies
Intellectual
Confusion Search for information
Ignorance of medical terms Search for help
Ignorance about where things are in the hospital
Ignorance about who the physicians are
Lack of clarity about how to explain the illness to others
Instrumental
Disorder and chaos at home Problem solving
Financial pressures Search for information
Lack of time and transport to the hospital Search for help
Need to monitor treatments
Interpersonal
Needs of other family members Search for help
Friends' needs and reactions Optimism
Relations with the medical staff Denial
Behaving in public as the parent of an ill child . . . and stigma
Emotional
Shock Denial
Lack of sleep and nutrition Acceptance
Feelings of defeat, anger, fear, powerlessness Maintenance of emotional balance
Physical or psychosomatic reactions Optimism
Reliance on religion
Existential
Confusion about "why this happened to me" Reliance on religion
Uncertainty about the future Acceptance
Uncertainty about God, fate, and a "just world" Search for information
Reprinted with permission from Chesler M, Barbarin 0.Childhood cancer and the family. New York: Brunner/Mazel.
1987:105.

nity agencies, and the like, remains an important ment (if necessary) is of paramount importance. School-
agenda item. At the very least, educational efforts ing is the most important public extrafamily setting in
should be undertaken to instruct all involved persons which most young people learn and practice social and
(e.g., teachers, clergy, insurance and employment agen- intellectual skills and prepare for productive occupa-
cies) about the medical and psychosocial aspects of tional and socioeconomic futures. Coherent psychoso-
childhood cancer. With the approval of the particular cia1 care requires staff liaison and educational programs
family, the community support structure can be in- for school personnel and for peers of young patients.
formed on an individual basis how they may assist the Rather than leave it to the family to bridge the gap
family. Vigorous outreach by the staff to these formal between the medical and educational settings, it is vital
and informal community systems is an essential ingre- that medical personnel provide local school staffs with
dient of a total care program. In some cases, it may be general and individualized medical information, in-
possible for medical systems or local American Cancer cluding recommendations for handling specific prob-
Society units to help create coalitions among specialized lems. Important steps in this regard are the identifica-
health organizations dedicated to children on a local tion and assessment of physical or neuropsychological
level (some of these organizations may be formal and compromises, attention to potential learning problems
professional human service systems and others may be and stigma, proactive responses to prejudice and dis-
informal and voluntary organizations). crimination, and the provision of resources to deal with
No doubt more will be added to this introduction these issues.
by colleagues Kupst and Monaco. Parents must be provided with information about
their own and their children's legal rights to a general
Schooling education, and to specific educational services, such as
homebound instruction, remedial classes, tutoring ser-
The maintenance of youngsters' school status and pro- vices, and the like, that may be available in the local
gress and their reintegration into the school environ- school system. Medical systems must recognize that not
Introduction to Psychosocial IssueslChesler 3249

only do parents need to be informed and supported Young patients themselves add other problems:
while they deal with school staffs, but that school staffs
also need education and support. Most educators are Lack of sense of humor and pleasant manner
ignorant of the current medical and psychosocial reali- Lack of respectful (semiadult) treatment
ties of childhood cancer. As a result, many are fright- Lack of real caring (over- and undersympathy)
ened at the prospect of having a child with cancer in the Lack of straight and complete information
classroom. They also may feel inadequate to deal with These kinds of issues pervade any stable and ongo-
the reactions and questions generated by the student- ing human relationship, and that is what the situation is
patient’s peers. Adequate information and liaison by between service providers and recipients in the case of
the medical staff could better prepare school staffs to childhood cancer-people in a stable and ongoing hu-
deal with potential problems of anxiety and awkward- man relationship of great import and under great stress.
ness, appropriate limit-setting, peer rejection, discrimi- These common concerns often alienate or disem-
nation, and alienation. Even if medical staffs are not
power parents and young patients, and on occasion
expert in handling these problems (and there is no rea-
prevent them from being active participants in their
son they should be), their identification and discussion
child’s or their own care. This is true not only in the
of these issues may help school staffs identify and get
psychosocial arena, where parents generally are experts
the help they need.
in the care of their child, but also in the medical arena,
In the context of schooling, an emphasis on the fam-
where parents usually end up being front-line care-
ily nature of cancer once again draws attention to the takers in outpatient treatment and monitoring. Well in-
impact on siblings of the ill child. Siblings, too, may
formed and actively involved parents can be a welcome
need support in dealing with their school status and
complement to the medical and psychosocial staff, but
progress, and educators may need help in understand-
only if they are prepared for these roles and if the staff
ing the psychosocial stresses typically experienced by genuinely invites their collaboration.
siblings of children with cancer. Although our focus is primarily on patients and
No doubt more will be added to this introduction
families, and supportive services useful to them, it is
by our colleague Deasy-Spinetta.
clear that the medical staff also often could benefit from
The Medical and Psychosocial Staff expanded psychosocial support. The stress of dealing
with childhood cancer is substantial for health care pro-
Much of the foregoing discussion has focused on things fessionals, and the rate of turnover and burnout, profes-
that the medical and psychosocial staff or institution sional disaffection and collegial alienation, problems in
should do (or consider doing) in providing adequate patient/family-staff relations, often reflect this reality.
support and services to the patient and family Staff retreats, counseling sessions, parent representa-
members. But in addition to performing these and other tion on the staff, patient/family-staff feedback and
functions, the staff itself is enmeshed in a series of inti- support opportunities, all may help deal with these is-
mate and long-term relationships with the patient and sues.
family. Care for the child and family with cancer is a No doubt more will be added to this introduction
high-stakes and long-term affair; people get to know by our colleague Foley.
one another quite well and relate quite intimately over
time. As such, the patient/family-staff relationship is a Terminal and Bereavement Care
very potent one.
Most of the time, of course, the staff-patient/fa- Special psychosocial resources must be available for the
mily relationship is positive and supportive, and most patient and family facing the terminal phase of the dis-
patients and family members speak highly of the staffs ease and treatment, and for the bereaved family.
with whom they deal. At the same time, patients and Whether a child endures the terminal phase of this ill-
family members consistently raise a number of problem- ness in the hospital or at home (or in a hospice facility)
atic issues about their relationships with the staff. For has been a major treatment option in some medical sys-
instance, among the concerns or problems often identi- tems, but not one available to all families. Even such
fied by parents are: options usually are implemented on medical terms
alone, and there may or may not be meaningful psy-
Lack of adequate information chosocial resources, such as an ongoing support and
Lack of honest and direct communication counseling system, provided. In addition, effective pal-
Inadequate resolution of conflicts liative care, including good pain control, is crucial at
* Lack of empathy for the patient this late stage.
Lack of involvement of parents in treatment Ongoing support for families after the death of a
3250 CANCER Supplement May 25, 2993, Volume 71, No. 10

child is a vital input to the possibilities of long-term terns and relationships engendered by the disease and
positive coping. Even though there may not be an active consequent coping efforts. Thus, the provision of psy-
patient to treat any longer, the medical system should chosocial care cannot cease with the discontinuation of
extend psychosocial care to the bereaved family. Some therapy or the completion of the medically determined
support may best be forthcoming from the psychosocial risk period.
staff, or it may best be available in the local self-help or The process of discontinuation of therapy itself of-
Candlelighters group: parents can choose their pre- ten is traumatic, and patients and family members may
ferred sources. Many Candlelighter groups have met need psychosocial assistance to prepare for and deal
with substantial success by integrating parents of living with this event. Anniversaries of various events (diag-
children and parents of deceased children in their pro- nosis, surgery, relapse, discontinuation) often recreate
grams. The parents of children living with cancer have stress. Major life transitions (such as marriage, birth,
much to learn from parents of children who have died, geographic move, a death in the family) may also trig-
including overcoming some of their worst-case fears. ger memories and trauma that call for sustained atten-
The parents of children who have died often benefit tion by staffs experienced and skilled in the dynamics of
from the knowledge that they have been able to make a the original disease and treatment process and its psy-
positive contribution to others. chosocial concomitants.
Each family should be invited to a postmortem con- Long-term survivors indicate a strong desire to
ference, and be given the opportunity to re-review the meet and talk with others like themselves. Their desires
course of the child’s illness, key decisions that were can be supported by medical centers’ efforts to create
made by the medical staff, and proximate reasons for local or regional networks of survivors or by the Candle-
death. Both individual and group counseling and sup- lighters agenda to create a national network of survi-
port should be offered again at this time. Grief lasts a vors of childhood cancer. In addition to providing psy-
long time, and both parents and professionals need to chosocial support and care to these young people, such
understand the unpredictability of the duration of grief, a network may be a major resource in influencing pub-
and to gain a healthy respect for its natural course in lic policy makers and funders, combatting societal dis-
each family. crimination and prejudice, and educating medical and
No doubt more will be added to this introduction psychosocial staffs as well as the general public.
by our colleague Whittam. Monitoring for medical and psychosocial (as well as
socioeconomic) late effects also must be provided on a
continuing basis. Late effects or long-term survivor
Long-Term Follow-Up clinics are in place at some medical centers, but not at
others. For those young people who move away from
Long-term survivors of childhood cancer, and their par- the medical center at which they were originally
ents, tell us that the process of coping with childhood treated, some link must be made to local internists and
cancer does not end when treatment ends; nor does it general practitioners who have some acquaintance with
end when the child is pronounced “cured” or a “long- the unique medical and psychosocial concerns they
term survivor.” The memory of trauma remains for sev- carry as long-term survivors.
eral years, as does the threat of relapse or recurrence, No doubt more will be added to this introduction
the need to cope with physical or psychosocial side ef- by our deliberations as well as by the reports of the
fects, and the changed personal and familial life pat- long-term survivor track of this workshop.