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FOR CAREGIVERS

CREATE A RESOURCE GUIDE FOR YOUR COMMUNITY

A parent diagnosed with cancer needs more than medical information to cope with this life challenge. It helps tremendously to know there are resources available that speak to concerns about parenting and children’s needs. Receiving a list of local resources can save the ill parent time, energy, and emotional stress.

A few community volunteers or a staff person in an agency can easily pull together a local resource list.

Here are guidelines we have found useful:

  1. Decide what geographic area you intend to cover.

  2. Decide which categories of services or agencies you wish to cover. We suggest that you start with Support, Education, Information, Family Activities for Parents with Cancer. Later, you might add other categories, such as Cancer Counseling and Psychotherapy Referrals, In-Home and Practical Support, or others.

  3. Do a web search on Parenting and Cancer services for your city or region. You may need to try this using different terms: parents with cancer, parenting through cancer, mothers with cancer, etc.

  4. Explore the web sites of any resources you find that seem appropriate and jot down the basic information:
    • Name of the organization
    • Address
    • Telephone numbers and e-mail addresses
    • Information about possible services for parents or their children
    • Also look at the links or resources listed on the site; they may lead you to other local resources. Do the same at each of the sites you discover.
    • Don’t forget large organizations like the American Cancer Society.
    • Local chapters may be able to give you some leads.

  5. When you have an initial list, begin calling the public and private agencies or groups that actually have services available for ill parents or their children. Use the telephone in order to establish a relationship, get detailed information, and enlist support and other possible contacts. By asking questions and having a conversation, you are raising interest in the project and validating the needs of ill parents for community services.
    • Ask to speak with someone who is familiar with psychosocial support and education services: e.g., the program director, oncology social worker or nurse, support group leader, resource center coordinator. Tell the person what you hope to do and find out if they would like their services listed in your resource guide. If so, ask them for the more detailed information:
      • Name of service and descriptions
      • Who the service is for: mothers, fathers, both parents, children or teens (get exact ages), the whole family
      • Disease: type of cancer, if any (e.g. breast cancer, gynecological cancer, any cancer)
      • Location, days, time
      • Cost, if any
      • Telephone number/e-mail for more information
    • Always ask: “Is there anything else at your agency we should include (e.g., a resource center that has books for parents or children)”?
    • At the end of the conversation, ask for leads to other local services for parents or children that could be listed in the guide. Get names and telephone numbers. You can also ask about any print, audio, or video materials they can recommend for parents with cancer.
    • Thank the representative and say that before printing the information, the agency or individual will be able to review it for accuracy (e-mail, snail mail or read over the phone).

  6. If, in your initial web or telephone book search, you do not find anything that sounds like a service for parents with cancer or their children, start calling oncology social workers and nurses and cancer resource centers at local hospitals and medical groups.

  7. Keep asking and growing your list until you feel you have covered most of the resources.
    • Write up and edit the information. (See our RESOURCE GUIDE 2006 as a possible model)
    • Have someone else proofread for coherence and accuracy.
    • Check accuracy with the agency or individual offering the service.
    • Print copies to deliver to the agencies and individuals for duplication.
    • Put the information on a web site, if there is one, and inform the agencies about the site

If you don’t find anything in your community, write a letter to the key cancer organizations and hospitals suggesting that they consider developing such services. Enlist parents with cancer in your efforts.

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