Healthcare services and supports for my child and my family
When your child has a serious or life limiting illness, planning to meet their care needs is a dynamic, ever-changing process. What works well for your child and family today may change as the illness progresses or stabilizes.
Planning requires ongoing, clear communication between the two most important groups involved in your child’s care. The first group is you and your family. You know your child as an individual best. You can help by sharing information about what your child needs and how they feel. The second group is the healthcare team (doctors, nurses, therapists, social workers, etc). They know the disease process and the experiences of other children and families with the disease. By working together, you can determine the best care plan for your child with this illness at this particular point in time.
Other people may also be involved in planning your child’s care at certain times throughout the illness. Examples include school representatives (teachers, principals, and private tutors), coaches and spiritual leaders.
Your child may be cared for by more than one health care team. Click on the services below to learn more about who might be involved in your child’s care.
Before your child was diagnosed with a serious illness, they may have been looked after by a family doctor or pediatrician. Many of these doctors also have other healthcare providers working in their practices, including nurses, nurse practitioners and receptionists. In some cases, your primary healthcare team might still be the main care provider for your child.
After your child is diagnosed with a serious illness, a significant amount of their care might be managed by a pediatric specialty team. The team may be located at a clinic at your local community hospital or at a tertiary children’s hospital or healthcare centre. In addition to the pediatricians (doctors) and nurses, these specialty teams may include:
- Social worker
- Respiratory Therapist
- Occupational Therapist
- Physical Therapist
- Speech Language Therapist
- Spiritual Care Provider
- Other therapists, including: Child Life Specialist, Recreational or Play Therapist, Music Therapist, Art Therapist, and more.
Your child’s main healthcare team may work with specialists who focus on one part of your child’s care (e.g. cardiologists, oncologists, respirologists, neurologists, etc.). For example, they may help to manage an infection, or help to manage the effects of the illness on a part of your child’s body, such as their kidneys or heart. You may see these specialists once, or they may offer ongoing care. In some cases, pediatric specialists may end up taking over the role of primary care for your child for a period of time.
Palliative care focuses on providing relief from the symptoms of an illness and helps to improve the quality of your child’s life and the quality of your family’s life. Pediatric palliative care teams are available through the tertiary care children’s centre in your area. Palliative care can help your child and your family at the same time that your child is actively treated for the illness. The name of the team and members of the team are different at different centres. These teams can help with:
- Managing symptoms
- Communicating with children of all ages around difficult issues
- Supporting families to make decisions about treatment and goals of care
- Supporting siblings of the patient
- Planning care, especially at the end of life (home, hospital or hospice)
- Linking different teams within the hospital and outside the hospital (in the community)
Most communities in Canada offer homecare services from visiting nurses, personal support workers or therapists. The types of providers and the amount of care (in hours or number of visits per week), may vary within and between communities.
If your child needs homecare, this can be arranged by a member of your child’s care team. Your local homecare service or agency will send someone to assess your child’s needs. This assessment may occur in hospital, if your child is an inpatient, or at your home. The homecare service will help you organize care for your child.
You may find that the homecare available in your community does not meet all your child’s and family’s needs, particularly when your child is very sick. You can supplement this care in different ways:
- Private health insurance through benefit plans at work
- Respite hours offered by some homecare agencies to give you a break for short periods of time
- Family members (grandparents, aunts and uncles) and non-family caregivers such as daycare providers, baby sitters, nannies. These people can be trained to help with your child’s care to do things like administer tube feeds, give medications, or do oral suctioning.
- Hospice organizations may offer volunteer home visitors to families receiving palliative care
Respite care is a community health service that provides short-term breaks from caring for your child. Respite services give you a chance to have time to yourself or to have time to spend with your other children or family members. They may also offer the child who is ill a chance to meet with other children or become involved in the community.
In some places, respite workers will come to your home. In other places, respite programs are offered in hospices or other community health organizations. Talk to your healthcare team about services in your area.
You may already be working with an alternative care provider such as a naturopath, chiropractor, or nutritionist. When this is the case, be sure to tell your child’s medical team about this treatment. In particular, tell them about any supplements or substances that your child is taking by mouth, receiving by injection or infusion, or wearing as a skin patch. Sometimes these treatments affect the way other medications and supplements work. Keeping all teams informed of all aspects of your child’s care may help prevent complications, misunderstandings, or negative interactions between medications/supplements and can ensure that we’re all working together to best help your child.
When your child is seriously ill, your family as a whole will likely need more help. Ask family members, friends, neighbours, or your local spiritual community if you need support. Your community may also have a hospice organization that provides visiting volunteers who will spend time with you, your sick child or their well siblings.
This kind of help may be particularly useful during times of hospital admissions or other stressful events. Ask others to:
Anything that gives you more time with your ill child, with your other children, or time to care for yourself (even if it’s just five minutes for a walk around the block) is invaluable.