Comprehensive Care Corner

Talking with a Social Worker

September 25, 2009

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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