Association of Pediatric Oncology Social Workers

info@aposw.org
 

 

Information for Parents, Families & Caregivers

Patients and FamiliesIn January, 2010, APOSW member Barbara Jones talked about pediatric oncology social work. Listen here to learn more about the impact that Pediatric Oncology Social Worker's have on Patient's and Families lives.You can listen to the talk (or download a PDF transcript) here.

Other sources of information that parents might find helpful include:

  Pediatric oncology social worker brochure (PDF)

  The Role of the Pediatric Oncology Social Worker in Assisting Children and Families

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Coping with the new diagnosis Sibling issues School and school reentry End of treatment and beyond
Relapse Blood and marrow transplant (BMT) Grief and loss Resources General resources

 

blueshadow  Coping with the new diagnosis

The shock of the diagnosis of cancer in a child results in a number of very strong emotions, some of which can be very intense.  The strength of these emotions and how long they last vary from person to person.

Some normal emotional responses to the diagnosis of cancer in a child and ways of coping include:

  • confusion and numbness:  almost everyone responds to shock with confusion and numbness.  It acts to limit the information a person can take in to prevent emotional overload.
  • denial:  "this can't be true" - a common response that can shield parents from what is really happening and can be a very useful response in the first few days.
  • guilt:  a common and normal reaction when parents feel they have failed to protect their child and blame themselves.
  • fear and helplessness: when a child is diagnosed with cancer, parents find that others are in control of how their child's days unfold.  For many parents, it creates a feeling of helplessness.  The very things that can lead to a parent feeling helpless can also lead to a parent feeling anxious (includes fear and panic).
  • anger:  a common response to a diagnosis that can become a problem if it is directed at people rather than managed.
  • sadness and grief: parents feel intense sadness when their child is diagnosed with cancer.  They grieve the loss of their once healthy child, the loss of the family life that they once enjoyed, and the threat of losing their child and the major changes in family life can create huge sadness.
  • hope: hope is the feeling when what is wanted can be had, or that events will turn out for the best.  As parents cope, hope for their future, their child's future and their family's future, grows.
     

The Canadian Association of Psychosocial Oncology has two self-assessment questionnaires that can help older patients and parents decide when to seek help: The Emotional Facts of Life with Cancer (PDF - see pages 10 - 13).

Pediatric oncology social workers can help parents deal with these emotions and help them learn better ways of coping.

Other sources of information that parents might find helpful include:

  Young People With Cancer: A HANDBOOK FOR PARENTS (PDF)
  Responses of Family Members to Childhood Cancer
  Children Diagnosed With Cancer: Dealing With Diagnosis (PDF)
  Healing The Family
  Support from Family and Friends
 

blueshadow  Sibling Issues

The diagnosis of cancer in a family can impact siblings.  The stress can show itself in a number of strong feelings and in how the siblings act.  The siblings of a cancer patient can experience:

  • concern:  siblings tend to worry about their brother or sister (medical tests and if their sibling will get better), and they also worry about how their own lives are going to change.
  • fear:  it is common for siblings to fear that cancer is something that they can catch, or that their parents can catch.  They may also fear that their sibling is going to die.
  • jealousy:  siblings, especially young siblings, can feel jealous at the attention and gifts that the patient is given, as well as the extra time alone with parents, and the center of everyone's attention that the patient becomes.
  • rejection:  siblings can feel that the patient is cared about more than they are because parents spend a lot of time at the hospital.
  • sadness:  siblings have very good reasons to be sad.  Their own lives and the life of the family have changed.
  • anger:  the lives of siblings are very upset and they have very good reasons to feel anger.  How this anger is shown can cause problems.
  • concern about parents:  siblings can try to protect parents from what the sibling is thinking because they do not want the parent to worry more.
  • guilt:  young children feel that the world is centered on them, and they can feel that when things happen, it is because of them.  Siblings can feel guilty about their reactions, even when those reactions are normal and expected.
     

Pediatric oncology social workers can help parents understand the issues that most siblings face and help them learn better ways of dealing with siblings.  Pediatric oncology social workers can also help siblings.

Other sources of information that parents might find helpful include:

  Siblings of Children with Cancer (PDF)
  Sibling Issues: The Impact of Cancer on Healthy Siblings (A Parents' Guide)
  Brothers & Sisters & Brain Tumors: A Child's Point of View on Coping with Cancer in the Family
  When Your Sibling Has Cancer: A Guide For Teens (PDF)
  Helping the Sibling of the Child with Cancer (PDF)
  What Helps Kids with Cancer and Their Brothers and Sisters?
  How Do Children with Cancer and Their Siblings React to the Diagnosis of Cancer?
  SuperSibs! Guide for Parents (PDF)
  Super Sibs
 

blueshadow  School and School Reentry

School-aged children often have their school routines interrupted due to medical appointments, hospitalizations, and treatment side effects.  Going to school is part of a normal day's routine and it is important that children hang on to their normal routines so that they feel less different than other kids.  Children and teens need to attend school as much as they can for two reasons: keep up with their school work, and maintain the friendships they have with classmates.

It is important that parents talk with their child's teacher about the patient's situation so that everything can be done to support the patient and his or her learning.  If siblings attend school, it is important for their teachers to also be aware of what is going on in their lives as well.  Teachers can often be the 'eyes' of the parents at school and they can bring any problems or concerns to a parent's notice so that something can be done for the sibling.

Many pediatric oncology social workers are able to go to schools and give classroom presentations that are aimed at educating classmates about a patient's situation.

Depending on where you live, there may be laws about how education is provided to home-bound students.

Pediatric oncology social workers can help parents and patients explore issues related to school and returning to school.

Parents may find this 'fact sheet' helpful: Childhood Cancer and School

Parents can order Educating the Child with Cancer: A Guide for Parents and Teachers edited by Nancy Keene from American Childhood Cancer Organization

    An essential resource for families who have faced the childhood cancer diagnosis. Written by top researchers in the field, and balanced with parents' personal experiences, this 322 page resource focuses on educational issues for children treated for cancer. It is intended to promote understanding and communication between parents, educators and medical professionals so that together they can provide an appropriate education for children who have been treated for cancer which in turn will lead to a productive and rewarding life.

Educators Website may also prove helpful.

The Leukemia and Lymphoma Society in Canada and the United States have 'back to school' information available that families and teachers may find helpful.

Parents, and patients who have undergone a blood or marrow transplant (BMT), may find this information useful;  Helping the Child with Learning Problems After Transplant.
 

blueshadow  End of Treatment and Beyond

The end of treatment is often a time of mixed feelings.  At one time the days until the end of treatment were counted with excitement and longing, but as the end draws near, the excitement is replaced with dread and uncertainty.  As treatment began parents were happy to see the Chemo end, as the end of the protocol does draw near, many parents wonder if the Chemo is all that is keeping the disease away.  Fears of relapse are voiced by most parents, but the majority of patients will go on to live disease free lives (nearly 80 percent of childhood cancer patients will live for a long time after treatment, and most will be cured).

For many parents, the feelings that were present at diagnosis return as treatment comes to an end.  Just as parents struggled to find a 'new normal' during treatment, they must find another 'new normal' at the end of treatment.  Treatment comes with the risk of life-long side effects, and the number and seriousness of these side effects can change this 'new normal' from person to person.

Some children will have a number of treatment side-effects that affect how they live their day-to-day lives.  For others it is the nature of their disease itself that has the greatest effect.

Pediatric oncology social workers can help parents deal with these issues and help them learn better ways of coping.

Sources of information that might be helpful:

  Curesearch
  End of Treatment
  Questions for the end of therapy (PDF)
  Late Effects of Childhood Cancer Treatments
  Cognitive Late Effects
  Emotional Issues After Childhood Cancer (PDF)
  Emotional Issues After Childhood Cancer - Spanish (PDF)
  Educational Issues Following Treatment For Childhood Cancer (PDF)
  The Price of Survivorship: Loss and Living
 

blueshadow  Relapse

Parents and older patients will often ask if their disease can return once it is gone.  It is possible that once a disease is gone, it can return.  However, the longer one is in remission (no disease present), the less likely it is for their disease to return.  It is also possible for some children's disease to progress (grow) while the child is on treatment.

The highest risk period for the disease returning differs from disease to disease.  When treatment ends, your child will continue to attend medical appointments and be watched for the disease returning.

Many parents describe the relapse of the disease being more difficult than the first time it was diagnosed.  They can feel more anger than they did at the beginning because both they and their child have "done everything" and yet it returned, for parents know that in most cases relapse of disease implies that their child's prognosis has worsened.  They can feel doubt that more treatment will work when the first treatment did not.  They can feel helpless and full of despair. Many of the feelings present at diagnosis are present at relapse. Parents and children, especially older children, can go between feeling good about what is to come and dreading it.

Pediatric oncology social workers can help parents deal with these emotions related to a child's relapse of disease and help them learn better ways of coping.

Other sources of information that parents might find helpful include:

  Curesearch: Relapse
 

blueshadow  Blood and Marrow Transplant (BMT)

What was once called Bone Marrow Transplant is now more commonly called Blood and Marrow Transplant.

Stem cell transplantation is a complicated procedure that is used to treat cancer and some blood diseases.  Stem cells have three sources: blood, bone marrow and (umbilical) cord blood. The child's own marrow is destroyed through chemotherapy and/or radiation and then stem cells are infused into the child's veins.  Depending on the child's circumstance, the stem cells from blood or marrow may be the child's own cells (autologous transplant) or from another donor who can be related or unrelated to the child (allogenic).  These stem cells then travel to the child's own bone marrow area and create new healthy blood cells.

Often when a decision is made to pursue a BMT, a child must travel to a Centre that specializes in BMT.  This can be very disruptive to all members of the child's family.

Pediatric oncology social workers can help parents and patients deal with the difficult emotions related to a blood and marrow transplant and help them learn better ways of coping, as well as help them with issues related to moving from their home and being separated from their support system and connecting with a new treatment team.

Other sources of information that parents might find helpful include:

  What Is a Blood and Marrow Stem Cell Transplant?
  What is a bone marrow transplantation?
  Bone Marrow Transplantation and Peripheral Blood Stem Cell Transplantation
  Psychosocial Issues for Related Donors
  Caring for the Caregiver: The Impact of Pediatric HSCT on Parents
  Emotional Challenges of Pediatric Survivors and Siblings after Transplant
  Managing Post-Transplant Fatigue in Children
  Protecting Your Child's Health after Transplant
  Chronic Illness and Transplantation Issues and the Adolescent
 

blueshadow  Grief and Loss

Losing a child is every parent's worst nightmare.  For parents who have spent years fighting cancer (perhaps more than once) they have limited physical and emotional resources to aid them with the task.  Just as every parent had their own way of dealing with their child's diagnosis and the treatment failure (or failures) that followed, so too does each family have their own way of dealing with the pending loss of their child.

The action path that a family chooses when cure does not appear reachable differs from family to family.  There is no correct path; there is just a path that is correct for each family.  Some families prepare for the death of their child before other families do.  Families may want, or need, to include older children in the planning steps they create as they come to terms with the inevitability of death.

Grief is not something that will simply go away with time.  Not talking about grief will not make it go away.  Many parents talk about grief as a journey that contains two parts: grief and mourning.  Grief is thought of as what we think and feel on the inside, whereas mourning is how we show those thoughts and feelings on the outside.  Sometimes we can look okay on the outside, but on the inside, our grief is raw and it pains.  We know that special times of the year (birthdays, holidays, and anniversaries) can make our grief more painful and our mourning may become more obvious to those around us.  This is normal.  We also know that cultural and religious traditions impact our mourning.

When parents know that treatment will fail their child, they experience anticipatory grief.  Parents know what is coming, but even when knowing, it does not lessen the pain.  It is like standing in one spot and knowing that a tsunami is coming; there is nothing you can do to stop it and there is no where you can run to avoid it. Some parents have described how knowing that they will lose their child because treatment has failed allows them to complete the circle of their child's life, something that parents who experience the sudden death of their child can not do, which they describe as healing.

Some parents might find a checklist such as this helpful: Are you grieving?

Grandparents might find this information helpful: Helping a Grandparent Who Is Grieving

Pediatric oncology social workers can help parents, patients and families explore issues related to grief and loss.

Other sources of information that parents and/or family members might find helpful include:

  When a Parent is Grieving the Loss of a Child
  Talking To Children About Death
  Caring for a Terminally Ill Child: A Guide for Parents
  Helping Younger People Cope with Cancer Deaths and Funerals
  Psychological response to Loss
  Understanding grief and Loss
  The Journey Through Grief
  Helping Dispel 5 Common Myths About Grief
  Helping Children Cope With Grief
  Helping Teenagers Cope With Grief
  Understanding Cultural Issues in Death
 

blueshadow  Resources

There are many resources available to children and their families during their treatment and during follow-up care.  Your pediatric oncology social worker can assist you finding the best resource for you in your area.
 

blueshadow  General Resources

  12 Oaks Foundation - USA
 
The Captain Chemo Website - available in Spanish
  James Crofts Hope Foundation - Australia
  Redkite - Australia
  Brain Tumour Foundation of Canada - Canada
  Childhood Cancer Canada Foundation - Canada
  Childhood Cancer Foundation - New Zealand
  Children with Cancer UK - UK
  American Childhood Cancer Foundation - USA
  Canadian Cancer Society - Canada
  American Cancer Society - USA
  Leukemia & Lymphoma Society - USA
  National Cancer Institute (NCI)
  Beyond The Cure - USA
  National Children Cancer Society - USA
  Starlight Children' Foundation - USA
  Chai Lifeline - USA
  Pediatric Brain Tumor Foundation - USA
  American Brain Tumor Association - USA
  The Childhood Brain Tumor Foundation - USA
  Children's Brain Tumor Foundation - USA
  National Brain Tumour Society - USA
  Alex's Lemonade Stand - USA
  B+ Foundation
  Blood & Marrow Transplant Information Network
  National Marrow Donor Program
  The National Children’s Cancer Society

Blood and Marrow Transplant
  Blood & Marrow Transplant Information Network - USA
  National Marrow Donor Program - USA

Fertility Preservation
  Fertile Hope.org
  ReproTech.com

Financial Help & Insurance Issues
  Resource list

Flight Travel:
  Angel Flight Australia - Australia
  Hope Air - Canada
  Angel Flight - Canada (British Columbia)
  Dream Flight - UK
  Airline Flight List - USA
 
Patient AirLift Services (PALS)

Hair Loss Options
  Angel Hair for Kids - Canada
  Locks of Love - Canada & USA
  Wigs For Kids - Canada & USA
  Hip Hats with Hair

Scholarships
  Childhood Cancer Canada Foundation - Canada
  Making Headway Foundation
  National GRACE Foundation
  Scholarships - USA
  Scholarships & Financial Information - USA

Wish Fulfillment
  Wish Fulfillment Organizations (some specific to certain areas)
 


Providing references to other organizations or links to other websites does not imply that APOSW endorses the information or services provided by them. Those organizations and/or websites are responsible solely for the information they provide. Listing of resources and websites is for informational purposes only.
 

 

 

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