Background

-  Diagnosis of cancer is one of the most difficult challenges that patients and their families face.

-  It makes them feel uncertain about the future

-  Prolonged time of treatment makes coping with the disease an exhausting process.

-  So, they seek available resources to help with coping

-  All these issues make it necessary for parents to look for support from other people.

-  people with the same kind of experience.

-  Looking for understanding and mutual support, a support group is one of the major tools that people use to cope with their illnesses

What is a support group?

A group of people with common experiences and concerns who provide emotional and moral support for one another (Merriam-Webster’s Online Dictionary).

The situation in Jordan:

The country:

-  Area: 92,300 sq km

- Border countries: Iraq 181 km, Israel 238 km, Saudi Arabia 744 km, Syria 375 km, West Bank 97 km

-  Population: 5,906,760

-  0-14 years: 33.8%

-  GDP - per capita (PPP): $4,700

The hospital:

King Hussein Cancer Center

-  Established in 2002

-  In honor of the Late king Hussein

-  Cancer was put in the name to overcome the dilemma

-  Is the only comprehensive cancer center in the middle east region.

-  Became an attraction for people seeking treatment from the whole region.

The Nurses’ role in support groups:

-  Historically, nurses have played a vital role in the establishment of the first support groups for people with cancer and survivors due to mutual involvement and the sense of care.

Nurses’ roles in supportive care of patients:

-  Empowering patients through education

-  Patient’s advocate

-  Stressing on supportive actions (creating a supportive environment, close follow up of patients' academic efforts)

-  Team work

-  Striving for better understanding of the psychosocial effects that cancer brings on children

-  Being always there

-  A major line of defense against any misconduct

-  Helping people to cope with their illness

The first parent support Group in Jordan:

-  The idea started by a single person who realized the importance of establishing a parent -support group in Jordan.

-  The group sessions started on November 2005.

-  It was basically intended for parents of children with CNS tumors,

-  started by us calling possibly interested parents and advertising the group meetings during clinics.

Baby steps:

-  Group started to meet once a month.

-  Good number of attendants at the beginning.

-  Decreased later.

-  The problem of organization.

-  Lack of compliance.

-  Many social and financial issues.

- Faced a period of depression.

Stabilization.

-  By June 2006: the team decided to begin a fresh start.

-  A team member (CNC) was given time for organizing the support group meetings.

-  Things started getting more organized.

-  Still lack of attendants.

CNC’s role in Support Group meetings:

-  Attending sessions regularly to encourage more attendance.

-  Holding some small talks at meetings for health education.

-  Inviting experts in many fields (special education, occupational therapy, child development, vision rehabilitation, etc).

-  Distributing some health education materials

-  Translating international publications (NBTF, ABTA) on coping with illnesses into Arabic.

-  Contacting a support group in America for mentoring.

Results:

-  More rapport and stability of the group’s meetings and settings.

-  Less dependability on health care team to publicize meetings.

-  Things were going fine!

After the ICCCPO meeting in Bali (April 2007)

-  We realized that we are way behind!

-  Many issues had appeared.

-  Jordan is not a member of the ICCCPO!

-  We don’t have an NGO status.

-  Minimum involvement of parents.

-  No funding for the group activities.

Decision to take the group to another level:

-  We opened the group’s meetings to other parents.

-  Presented the results and achievements of other support groups in Asia to parents.

-  Showed great results.

-  Parents started enrolling more actively in the support group meetings after seeing some of the other parents achievements.

-  Increased number of active participants.

-  More active involvement of expert volunteers.

-  We started attending as facilitators.

-  Official recognition of the Support group’s activities in the Center.

-  More acceptance of the medical team for the Support group’s efforts.

-  This lead to higher rates of enrollment.

-  The group became an influential power to persuade the management and health care members of their needs.

And what we achieved

- Establishment of a telephone network (by parents) to inform all members of meetings and any new issues.

-  Parents started organizing their own agendas and distributing materials by themselves.

-  Parents started bringing speakers and experts from the local community to discuss their children’s issues.

Support group satisfaction study:

-  We started a study on parents’ satisfaction of the groups meetings, made a pilot study.

-  Initial data were collected.

Preliminary Results:

-  Good satisfaction of the group’s achievements.

-  Satisfied with the information and knowledge they got.

-  Parents were unsatisfied with the power that the group gave them.

-  Unsatisfied with the number and quality of the group’s activities.

What about ICCCPO?

-  Jordan is still not a member of ICCCPO.

-  No NGO status for the support group.

What are the obstacles?

-  We are still a developing country.

-  Bureaucracy.

-  Very difficult to start an NGO.

-  Financial issues.

-  Lack of compliance.

-  Lack of medical team involvement.

-  Gender differences.

How did we solve the NGO problem?

We started to work jointly with the Jordan Society of Pediatric Oncology (JSPO).

JSPO is a professional society of pediatric oncology professionals in Jordan, who study and treat childhood cancer in Jordan and collaborate with other professionals who take care of children with cancer in Jordan and around the world.

What is still needed to be achieved?

-  More activities for the support group.

-  Less and less dependency on the nurses and other health care members to support the group’s meetings.

-  More powerful actions on the ground.

- Establishment of a local ICCCPO branch in Jordan.

-  Getting more funding to support group’s actions and events through JSPO

What’s next for SIOP- Asia, Oman?

-  A local ICCCPO branch will (hopefully) be initiated.

-  Parents will be attending, not the medical team.

-  The study results will be published.

Conclusion

-  The ideal support group should be lead by parents, but we believe that special considerations in different countries may necessitate leadership of health care professionals in early stages.

-  Support groups may give hope and act as a source of information and support for cancer patients and their families.

Tha’er G. Almomani, RN.
Clinical Nurse Coordinator
Pediatric Neuro/Ocular Oncology
King Hussein Cancer Center
Amman, Jordan
thaer.momani@yahoo.com