AYA Resources

Family and Caregiver Support

A caregiver is anyone who gives care and support to someone else. Caregivers are a very important part of the health care team.

Caregiving can place increased demands on your schedule, resources, emotions and existing responsibilities. Coping strategies such as stress relief exercises and seeking the support of others are all important topics to consider when acting as a caregiver.

Caregiver Resources

UHN Caregiver Resources (for patients receiving cancer care at UHN)

• Managing Caregiver Stress: for people caring for a loved one
• Managing Caregiver Stress: information for people caring for a loved one with cancer
• Caregiver Clinic - Princess Margaret Cancer Centre
• Caregiver Education Support and Skills Program

Caregiver Support Groups and Services

Gilda's Club - Friends & Family Caregiver Support Group
A virtual support group for any friends or family members who have a loved one with a cancer diagnosis. This group may touch upon such topics as; managing at home, alternative or complementary treatments, healthy lifestyle choices, and dealing with emotions. This group also has a focus on the self-care of the family member or friend.

• Read more about the Caregiver Support Group

Wellspring
Wellspring offers support to patients and families virtually across Canada and in-person in Alberta and Ontario (Brampton, Greater Toronto Area, London/Stratford and Niagara. There are a variety of programs available for caregivers that can be found on their program page (select caregiver in filters under “Designed For”).

Notable groups:

• Caregivers Connect: Mindfulness for Caregiving
• Caregivers Connect: Support and Relaxation
• Caregivers Support Group
• Caregiving Support: Finding Sanctuary

Young Carers Program
The Young Carers Program offers a variety of free programs, workshops and special events throughout Toronto for young caregivers. Any child or youth 5-18 years old can take part if they are in a caregiving role for a parent, grandparent, sibling or other relative with a chronic or life-threatening illness, disability, addiction, mental illness, or language barrier.

• Visit Young Carers Program

Supports for Parents and Children

Children also play an important role in the cancer experience. There can be increases demands also placed on the family as a unit as there are possible disruptions in the life they were familiar with. Additionally, families spend time worrying about the impact of the cancer experience on their children. Finding the right tools to support children is important.

Websites

• Talking to children about cancer - Canadian Cancer Society - You may worry a lot about children who are still at home and how cancer affects them. You might be tempted to avoid talking about cancer, especially with younger children. But children often sense something is wrong and may imagine the worst if they’re not told the truth. They may be angry if they hear the news or updates from someone else. By talking honestly and helping them share how they feel, you make it easier for them to feel safe and secure. These strategies can help you talk to your child or teen.
• Talking to Children When a Loved One Has Cancer - CancerCare - Good communication with your children helps everyone in the family cope with whatever changes lie ahead. Among the many difficult questions parents face when a family member is diagnosed with cancer is “What do I tell my children?
• Talking to Children About Cancer - Hope & Cope - This booklet gives parents general tips on talking to their children about cancer using words that they will understand. It’s important to keep the lines of communication open, to encourage honest conversation and to provide reassurance whenever possible.
• Talking to Your Children About Cancer - Nankind - Some information you should consider when deciding how to discuss your diagnosis with your children.
• Mom Has Cancer: What Comes Next — Talking to Kids about a Family Diagnosis (YouTube video)
• Resources for Parents with Cancer - from Mass General Hospital (Boston, MA, USA)
• Talking to Kids about Serious Illness: the 6 C’s and 3 W’s - from SickKids Hospital

Programs and Support Services

• Gilda's Club Toronto - Programs include:

• Kids Talk Out - A virtual support group for children ages 4-12 who currently have someone in their life who has cancer. By using a variety of therapeutic play activities, which are mailed to their home, the children will engage virtually to receive support and education, ask questions, express difficult feelings and share common experiences.
• Teen Talk: Family & Cancer - A virtual support group for teens ages 13-17 who have an immediate relative living with cancer. The group helps youth find their own unique voice and develop positive peer relationships and coping strategies.
• Teen Voice: Expression Through Grief & Cancer - A virtual 6-week virtual peer-support group program providing a space for teens to develop coping skills through expressive outlets such as art, music and more. For teens who have an immediate family member living with cancer or have lost someone from cancer.

• Virtual Programs for Families, Nankind - Nankind is a registered charity that provides free, specialized childcare to families living with cancer.
• Children’s and Parents’ Program, Wellspring - Wellspring offers a Children’s and Parents’ Program that brings parents and their children together for networking, the conversation about having cancer in the family, and tools to help cope and express feelings.

Books/Workbooks

• Both Sides Now by Ruth Pennebaker (teen) - Pennebaker's bittersweet novel about a 15-year-old's attempt to cope with her mother's breast cancer.
• Breast Cancer: Questions and Answers for Young Women by Carole G. Vogel (teen) - This book was the winner of the 1996 Joan Fassler Memorial Book Award, given by Association for the Care of Children’s Health to recognize an outstanding contribution to children’s literature dealing with health-related issues. This important, valuable resource for teenage girls and other women has been completely updated to reflect the great strides made in the diagnosis and treatment of breast cancer.
• My Parent Has Cancer and It Really Sucks by Marc Silver (teen) - Father-daughter team Marc Silver and Maya Silver wrote “My Parent Has Cancer and It Really Sucks” (Sourcebooks, 2013) to serve as a guide for teens whose parents have cancer. The book is based on personal experience, the guidance of experts and the stories of over 100 teens.
• When Your Parent Has Cancer, the National Cancer Institute (teen) - This guide is for young people who have a parent with cancer. You are not alone. Find out what has helped other teens get through this tough time.
• My Life Their Illness (workbook) - This activity book helps kids think about how someone’s illness is affecting their life.
• Because… Someone I Love Has Cancer: Kids’ Activity Book by the American Cancer Society (workbook, ages 6-12) - This inspired publication is designed to address the basic goals of therapeutic support for children who have a loved one with cancer. Featuring five self-sharpening crayons to inspire creativity, this activity book also includes a 16-page removable guide for caregivers with family and group activities, as well as activities that offer ways to discover inner strengths and enhance self-esteem.
• Life Isn’t Always a Day at the Beach: A Book for All Children Whose Lives Are Affected by Cancer by Pam Ganz (workbook, ages 5-12) - A workbook for the cancer patient or the child whose family member has cancer. Covers all kinds of feelings and openings for creative ideas.
• When Someone Has a Very Serious Illness: Children Can Learn to Cope with Loss and Change by Marge Heegaard (workbook, ages 9-12) - An excellent resource for helping children learn the basic concepts of illness and various age-appropriate ways of coping with it.
• When Someone You Know Has Cancer (workbook) - This activity booklet was designed to help families talk with their children about cancer, answer their questions, reassure them, and suggest ways they can show their love and get involved in the fight against the disease. The illustrated booklet includes a story, "The Great MacGrady," featuring popular Arthur characters, for parents to read aloud with children and talk about together. In addition, activities to help children express their feelings about someone having cancer, and other resources, are suggested.
• Raising an Emotionally Healthy Child When a Parent is Sick by Paula K. Rauch, MD and Anna (Nina) C. Muriel, MD, MPH.

Bereavement Resources

• The Dinner Party: Life After Loss - A community of mostly 20- and 30-somethings who’ve each experienced significant loss. We get together over potluck dinners to talk about the ways in which it continues to affect our lives and how to thrive in #lifeafterloss.
• Camp Widow - An organization providing support groups, practical tools and resources for anyone who has lost a spouse to cancer.
• Wellspring Bereavement Support - Bereavement programs provides a supportive, accepting community for those who have lost a loved one to cancer.