Mark Chesler (Vice President, ICCCPO)
(Extract from the ICCCPO Newsletter, V8, N2 - Spring 2001)
in
specific communities and often linked to specific treatment centers, effective
parent groups generate programs that respond to the five major stresses or
challenges that children and parents of children with cancer face (Chesler &
Eldridge, 2000): informational, practical, social, emotional and existential.
As long as children get cancer parents will try to find the resources to
aid their children and themselves; in so doing many parents reach out to one
another and find, join or create local groups. Group activities differ according
to the needs of parents in different locales, and the resources available to
them, but in general groups focus on meeting some or all of the five stresses.
In
responding to the informational stresses of childhood cancer groups
provide parents with information about the disease and its treatments, about
psychosocial issues and coping strategies, and about the medical center and
staff (e.g., where to find the cafeteria, who to talk with about billing). They
also help point families toward available resources in the community, especially
with regard to gathering information about financial and insurance issues. They
accomplish this through arranging staff presentations, parent panels, discussion
groups, newsletters, special guidebooks or handbooks, and family resource
libraries.
Group
programs directed to the practical stresses try to ease parents’
burdens of everyday living, including child-care and financial responsibilities.
This is done through financial assistance, lodging for parents who must
travel long distances (e.g., Ronald MacDonald Houses), respite care, and
information about practical issues such as school programs or funeral
arrangements and how to manage at-home chemotherapy. Many groups raise funds to
help pay for treatment, purchase wigs, prostheses or in-hospital television
service for children and to help pay for travel, parking or extraordinary bills
for families. Some groups contribute funds to their local hospital – to
improve services for families or to support research programs. These practical
issues are especially potent in the less wealthy localities and nations, where
basic medical treatment (trained expertise, chemotherapy drugs), post-treatment
access to clean water and air, and even funds for travel to clinics are either
unavailable or prohibitively expensive for all but the very affluent.
In
responding to the social or interpersonal stresses of childhood cancer
local groups often support parents who feel isolated and awkward with their
prior families and friends and provide them with alternative social networks.
They do this through group meetings and discussions, connections with veteran
parents who know what they are going through, social and recreational events for
the entire family, and home or hospital visits. Some groups also have
established summer camping programs for children with cancer, their siblings,
and on occasion their entire families. The funding and creation of telephone
trees among parents and computer links between hospitalized children and their
schoolmates are other examples of efforts to reduce social isolation.
Groups
also help people deal with the emotional stress and personal trauma of a
child’s life-threatening illness, with potentially intense familial conflict
and confusion, and with the ups and downs of hope and fear attendant upon
treatment. Such programs focus on peer affirmation and co-counseling,
“emotional rap” sessions, mutual empathy and sharing of deeply held
feelings. Some groups hold special sessions for mothers and fathers separately,
for teenage patients or siblings, and for bereaved parents.
In responding to the existential or
spiritual stress of this illness groups help people “make sense” of
their experience and place it within a framework of belief in a spiritual or
secular faith, including issues of religious belief and challenge. They do this
through the creation of “narrative communities” wherein parents discuss
their experiences and struggles with God and Fate, where they “make
sense/meaning” of their past and future situations.
In responding to all these stresses or
challenges, and through all these activities, parent groups often work with
local medical systems/personnel and community agencies in attempts to assert
child and family needs, improve medical/psychosocial/societal care and create
change that will benefit them and their children. Above all, the stresses posed
by childhood cancer are potentially disempowering; the (re)development of a
competent and active sense of oneself, and mobilization of collective energy and
engagement with others through such group activities in one way or another help
children and their families develop a more empowered outlook.
Local
parent groups come in many different sizes and shapes. Some are quite large
(30-50 active members and several hundred on a mailing list) while others are
small (4-6 members). Some create a very formal structure, with by-laws, elected
officers and a not-for-profit tax exemption or charitable license (this is
especially necessary for those groups that raise substantial funds) while others
are quite informal and emphasize personal conversations. Some are long-lasting
(in existence for 20 or more years); others vanish in 2-3 years as leaders
burn-out or as their children pass beyond this crisis (via either death or
cure); still others may lie fallow for a while and rise again when newly
energized parents recreate a lay support system. Some groups are run by medical
staff members (these are not parent self-help groups although they may be quite
useful) while others are governed by parents themselves, perhaps in coalition or
collaboration with professionals. Problems of access, transportation and
networking make it more likely that medical or cancer association staff members
play these key roles in less wealthy areas and nations.
At
the national level:
parent organizations may serve both individual parents/families and local
groups. They generally coordinate and share information and resources (sometimes
including money but usually information, advice and support for leaders) among
various local groups via meetings, conferences, newsletters and electronic
media. The United States’ Candlelighters Childhood Cancer Foundation also
operates an information hotline for patient/family concerns, an ombudsperson
system for second opinions on medical and legal matters, and a leadership
training program for current and future leaders of local parent groups. In many
other countries national level organizations provide local groups with services
that would be difficult and costly to duplicate at each local site (e.g., funds
for group activities or to support individual families’ needs, a national
newsletter for parents or young people, camps for patients or survivors or
siblings, and resources for group leaders). And many national organizations of
childhood cancer parent groups sponsor yearly meetings, either of all parents or
of group representatives.
In
addition, national groups often have access to influential health care
policy-makers and the ear of national cancer associations and governmental
bodies concerned with cancer policy, health benefits, special educational
programs for hospitalized or homebound children, funding of childhood cancer
research and treatment, environmental regulations that impact cancer,
psychosocially sensitive treatment protocols, etc. They often are advocates of
change in the delivery of medical and psychosocial care and represent parent
concerns and establish liaison with national organizations of oncologic
physicians, nurses, social workers and psychologists. Some engage directly in
lobbying efforts, both in the legislative arena and with employers and insurance
companies, to challenge patterns of discrimination.
There is
substantial variety in how and when groups are organized nationally. Of the 31
national childhood cancer parent organizations currently represented in ICCCPO,
9 were founded prior to 1985 (8 of these 9 are in wealthy nations, while 7 of
the 10 founded after 1995 are in the less wealthy nations). Some were initiated
by parents, some by health care professionals, and some by professionals and
activist parents working together. All these organizations have national Boards
of trustees or overseers, ranging in size from 4-18, and in most cases the
national Boards are numerically dominated (50% or more) by parents, with some
professional medical staff members, some long-term survivors of childhood
cancer, and some members of the general public (e.g. public representatives or
major donors).
The size
of these national organizations also varies considerably. The United States
parents’ organization counts some 300 local groups in its family, Canada 45
and Germany 50; but the Japanese organization has 11 local chapters, Sweden 7,
and The Republic of South Africa 6. The smallest nations (e.g., Netherlands,
Iceland, Israel) often have only 1 group. Similarly, they vary greatly in the
amount of funds they raise: associations in many nations, especially those in
the less affluent countries, have very minimal funds at best.
These
national organizations vary much less in the ways they raise funds and the uses
to which they put these funds. A few receive a subsidy from their national
governments or cancer associations, but almost all raise funds from public
donations and corporate or governmental grants. Several solicit membership fees
from parents/families and friends and several others require local groups to
contribute to the national organization. Almost every national organization
maintains an office and many have at least one paid staff member on site. Funds
are expended for educational programs (aimed at the general public, parents of
children with cancer, medical and social service staffs), newsletters and
meetings that link parents on a personal and/or regional/national basis, support
for medical research and facilities and staff, services to families and children
in terms of financial assistance or special housing and travel, and development
of local groups.
In
some national organizations there are strong lines of accountability between
local groups and the national organization. This is true in Canada, Germany and
Sweden. On the other hand, in the U.S. there are only informal linkages among
local groups and between local groups and the national organization, with the
latter operating primarily as an information agency or educational clearinghouse
and network of semi-autonomous grassroots groups. The latter form is also common
in the less wealthy nations and in nations where a true national organization
has not yet emerged. Part of the difference in national-local forms may be
related to the history of parent organizing efforts, and the extent to which
national organizations emerged from preexisting local groups (bottom-up) or
established themselves first and set out to create local groups (top-down). In
addition to issues of origins and tightness-looseness, the difference
between power primarily being located at the national level or the
local level means that some national organizations’ fortunes rise and fall
with the economic and political progress and commitment (or lack thereof) of
strong locals. Under these circumstances some local groups have more influence
on national programs and operations than do others.
At
the international level:
a relatively new organization, the International Confederation of Childhood
Cancer Parent Organizations (ICCCPO), was formed in the mid-1990s. ICCCPO now
includes 54 member organizations concerned with childhood cancer representing 43
different countries; 31 of these organizations are national parent groups
(others are local groups not yet nationally organized or are organizations not
run by parents – Associate Members of ICCCPO). ICCCPO has several core goals:
(1) Education - of parents, educators, physicians, nurses, etc. Parents and
parent organizational leaders have areas of special experiential expertise that,
when shared, can increase others’ knowledge and help direct services more
appropriately. (2) Public awareness - of the general public with regard to
childhood cancer, children’s and families’ needs, the increased likelihood
of survival and normality, and the continuing need for medical and psychosocial
checkups and support. (3) Mobilization and development - of parents and parent
groups at the local and national levels. ICCCPO seeks to prepare and train
parents to create and lead parent groups and so strengthen this worldwide
movement. In addition, parents are encouraged to act as advocates for their
children with regard to medical and psychosocial services. (4) Advocacy - of
adequate medical and psychosocial treatment, of action against social
stigmatization and discrimination, and for advance in medical and psychosocial
cure rates throughout the world (especially in the less wealthy nations).
ICCCPO
implements this agenda through representation and liaison to national and
international cancer associations, physician organizations and health agencies
(e.g., World Health Organization, International Society of Pediatric
Oncologists, European School of Oncology, Monza International School of
Pediatric Hematology Oncology), through newsletters and pamphlets distributed to
national parent organizations, through visits to member organizations and
meetings at which member organizations share their experiences and suggestions,
and through a variety of special projects. One of these special projects
promotes “twinning” relationships, wherein parent representatives in
wealthier nations create personal exchange, training and resource sharing, and
ongoing linkages with parent organizations in less wealthy nations
The
member organizations of ICCCPO share more than a common interest in the struggle
with childhood cancer; they also conduct fairly similar programs, encounter
generally similar organizational problems, draw heavily on personal and
voluntary energy, and are deeply committed to each others’ growth and ability
to serve children with cancer and their families.