Comprehensive Care Corner

Talking with a social worker

Linda Waterhouse, pediatric hematology/oncology social worker at McMaster Children’s Hospital’s hemophilia clinic in Hamilton, Ontario

Q. As a social worker, what role do you play in the comprehensive care team?

A. My role is to work with the team to provide support to patients and their families. It involves getting to know families and finding out what their understanding of the diagnosis is so the team can best address the family’s needs or concerns. Sometimes I’ll help with counselling, sometimes I’ll help families overcome financial issues preventing them from getting adequate treatment, or sometimes I’ll step in to make appropriate referrals to community groups.

Q. Your job at the McMaster Children’s Hospital largely involves working with newly diagnosed patients and their families. How do you help these families incorporate regular treatment into their lives?

A. It’s really about encouraging good, open communication within the treatment team and between the team and the family. The families need to feel comfortable asking any questions they may have so the team can address their concerns – like when they need to come in versus when to phone in, for example.

In the beginning, we really encourage families to call every time that there’s an injury or they see a bruise or something has happened, even if they’re not sure. We would rather they call so that the treatment team can decide what needs to be done.

 

Q. What do you do when families are having trouble staying on top of treatment?

A. One of the roles of the social worker is to meet with the family to try to find out what the obstacles are to compliance so we can work through them together, with the rest of the team.

Each family is unique and the obstacles are often very different. For some, it could be that making a long-distance call to the clinic to ask a question is too much money. For others, it may be too expensive to come into the clinic for appointments. A lot of times, families have difficulty giving the injections before school in the morning. The problems are often different, and the solutions are often different, but it’s always important to have a good working relationship with the family so they’ll feel comfortable sharing what’s going on.

 

Q. You mentioned that the transition period – when a patient is moving from pediatric to adult care – is a “hot topic” right now in the hemophilia community. Why is that?

A. Trying to help teenage boys take on more responsibility for their self-care can be a challenge – for the young men themselves, their families, and the treatment team.

It can be hard because some clinics will only care for patients until they’re 18, so the patient physically needs to move. For others, they stay at the same hospital, but the staff changes and they have a whole new team.

Currently, the Canadian Hemophilia Society has a Transition Project Working Group that is working to come up with a transitioning model that can be used in hemophilia clinics across the country. That will be helpful for everyone involved.

 

Q. With your experience working with families in that transitioning stage, what do you suggest to help make it easier?

A. Probably the best way parents can help is to gradually let their sons take on more when it comes to their self-care. They should give them time alone to speak with the team so they can ask their own questions. They should encourage them to order their own factor and record their own infusions. Plus, a lot of it has to do with leaving it to them to give their own treatment, and encouraging them to call the team when they have concerns or need to come in rather than waiting for their parents to do it.

It’s important to help them take more responsibility and more control for their own treatment, including in interactions with the comprehensive care team.

 

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Talking with a physiotherapist

Greig Blamey, physiotherapist at the Adult Bleeding Disorders Clinic in Winnipeg

Q. Why is the physiotherapist’s role so important to the comprehensive care team?

A. Comprehensive care means always involving the person who is best equipped for the type of care needed. Most nurses, hematologists, and family physicians have good musculoskeletal knowledge, but problems may occur with the finer points. That’s one reason why my role, as a physiotherapist, is so important: Joint assessment and joint treatment is the basis of a physiotherapist’s training.

Q. As a physiotherapist, you often counsel your patients on how to approach sports and other physical activity. What do you tell them?

A. First of all, we do advocate that people with hemophilia participate in sports. They do have to put a lot of thought into which sports they choose, though. The main consideration for people with hemophilia and their parents is the level of risk each activity may have for different muscles and joints, like the ankles, knees, and elbows. Once they’ve considered that, they should talk to their treatment team at their hemophilia centre and make the decision together.

Q. Are there specific activities you would recommend for people with hemophilia?

A. We try to recommend that they gear themselves toward sports with a lower level of risk, but, of course, that means something different for children than it does for adults. Skating, for example, is not generally considered a “contact sport,” but it should be seen that way for children because they may have a tendency to fall on the ice more while they are learning the activity.

As well, everybody has a different pattern of bleeding. So somebody who has had an awful lot of elbow joint bleeds, as an example, might not be well suited to play tennis. The decision has to be based on individual bleeding history.
You can’t necessarily say across the board that one sport is low risk and another is high. There are tools available on different websites to help you assess risk, but, realistically, choosing activities needs to be done on an individual basis.

Q. What else should people with hemophilia and their parents consider when getting into a new sport or physical activity?

A. Before participating in any sport or activity, you need to discuss equipment with your physiotherapist. People with hemophilia should wear properly fitting protection equipment that will help reduce the chances of developing a joint or muscle bleed. And you need to consider that while a person without hemophilia may decide not to wear elbow pads for volleyball or while rollerblading, for example, someone with hemophilia must ensure they are always using the recommended safety gear while participating in these sorts of activities.

Q. What should young men think about if they’re interested in weightlifting?

A. Weightlifting is potentially dangerous for people with hemophilia since there’s a tendency for sudden, high-force exertion, so you’re not going to find it on the list of highly recommended sports. However, there are ways it can be done safely.

I suggest, as with other sports and physical activities, that you make sure to warm up beforehand and stretch afterwards. That’s very important for people with bleeding disorders because muscles can bleed too if they’re not prepared for exercise.

I’d also recommend machines over free weights as a general rule, since the movement may be more controlled with a machine.

All in all, if you want to get into weightlifting, discuss it with your healthcare team – particularly your physiotherapist – first. It’s important to be taught how to do it safely.

 

Greig Blamey is a clinic Physiotherapist at the Adult Bleeding Disorders Clinic in Winnipeg. He is also the current President of the Canadian Physiotherapists in Hemophilia Care (CPHC.) Greig was recognized by the Canadian Hemophilia Society (CHS) with the 2007 CHS National Award of Appreciation. He also received the Special Recognition Award from the Manitoba Chapter of the CHS in 2007, which was given to him for his outstanding service to the care of people with inherited bleeding disorders.

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The role of the hemophilia dentist

Preventing dental problems is an important part of hemophilia care. It is also important to have a dentist who understands your hemophilia needs when performing dental surgery. Many hemophilia centres have a dentist on site, but a family dentist can also work together with your hemophilia treatment centre to ensure you get the right care.

The comprehensive care team usually includes:

• a doctor
• a nurse
• a physiotherapist
• a social worker

Hemophilia Treatment Centres

Many people with hemophilia regularly visit a hemophilia treatment centre (HTC), which can include many or all members of their comprehensive care team. The association of hemophilia clinic doctors recommends adults with hemophilia visit their centre once a year and children with hemophilia twice a year.

Family Members

Family members are also important to comprehensive care, since they can provide many types of support, including emotional support, awareness of bleeds, and care of bleeds when they happen.

You

If you have hemophilia, you are the most important partner in your own care. By being aware of hemophilia, educating yourself, monitoring your condition, and keeping regular healthcare appointments, you control your health and well-being. If you have a child with hemophilia, remember that while your son has many other experts on his comprehensive care team, you are the expert on your son and, with the help of your HTC, you manage his care.

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The role of the hemophilia physiotherapist

The physiotherapist takes care of your, or your child’s, muscles and joints. They can assess the joints and muscles, prescribe special exercises, and advise on ways to avoid bleeds. They can also help with recovery after a bleed.

The comprehensive care team usually includes:

• a doctor
• a nurse
• a physiotherapist
• a social worker

Hemophilia Treatment Centres

Many people with hemophilia regularly visit a hemophilia treatment centre (HTC), which can include many or all members of their comprehensive care team. The association of hemophilia clinic doctors recommends adults with hemophilia visit their centre once a year and children with hemophilia twice a year.

Family Members

Family members are also important to comprehensive care, since they can provide many types of support, including emotional support, awareness of bleeds, and care of bleeds when they happen.

You

If you have hemophilia, you are the most important partner in your own care. By being aware of hemophilia, educating yourself, monitoring your condition, and keeping regular healthcare appointments, you control your health and well-being. If you have a child with hemophilia, remember that while your son has many other experts on his comprehensive care team, you are the expert on your son and, with the help of your HTC, you manage his care.

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The role of the hemophilia nurse

The key contact person on your hemophilia treatment team is the hemophilia treatment centre (HTC) nurse coordinator. He or she will talk with you on the phone, book your appointments, monitor your infusions at the HTC, and tell you about important hemophilia information.

The comprehensive care team usually includes:

• a doctor
• a nurse
• a physiotherapist
• a social worker

Hemophilia Treatment Centres (HTC)

Many people with hemophilia regularly visit a hemophilia treatment centre (HTC), which can include many or all members of their comprehensive care team. The association of hemophilia clinic doctors recommends adults with hemophilia visit their centre at least once a year and children with hemophilia twice a year.

Family Members

Family members are also important to comprehensive care, since they can provide many types of support, including emotional support, awareness of bleeds, and care of bleeds when they happen.

You

If you have hemophilia, you are the most important partner in your own care. By being aware of hemophilia, educating yourself, monitoring your condition, and keeping regular healthcare appointments, you control your health and well-being. If you have a child with hemophilia, remember that while your son has many other experts on his comprehensive care team, you are the expert on your son and, with the help of your HTC, you manage his care.

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