Fathers of Children with Special Needs: the Place of Mothers in Father Involvement Research

Ted McNeill led FIRA's Fathers of Children with Special Needs research cluster, which conducted a qualitative study on  the ways in which fathers of children with chronic health conditions define their parenting roles and identities by examining the experiences of fathers in families caring for children with juvenile rheumatoid arthritis, spina bifida and cerebral palsy. One interesting aspect of McNeill's work was the importance he placed on including the views and experiences of mothers. In fact, McNeill and his colleagues chose to look at this aspect of father involvement through the lens of the couple relationship.

"Some of our previous research focused exclusively on the experiences and feelings of fathers," says Dr. McNeill, director of Social Work at the Hospital for Sick Children and professor of Social Work at the University of Toronto. "What we found was that you could usually see the silhouette of the mother in the father's experience. The silhouette of the father was there in the mother's experience as well. I began to realize that it's hard to understand and make sense of the experience of a father without taking into account the relationship with his partner."

Barry Hewlett, an anthropologist at Washington State University and editor of Father-Child Relations. Cultural and Biosocial Relations (Aldine De Gruyter, 1992) agrees. Hewlett, who has studied the caregiving behaviour of fathers in certain ethnic groups, says, "To some extent, you can't really see the father/child relationship without seeing the mother child relationship as well. In fact, in most cultures the nature of the mother-father relationship dramatically impacts the nature of father-child relationship."

Not all children live in a mother/father family, but in his clinical work, Dr. McNeill has observed that the mother/father dynamic is often a key factor affecting the way parents adapt and cope with caring for a child with a chronic health condition. So when he and his colleagues, developed their research proposal for the Fathers of Children of Special Needs research cluster in FIRA's Community University Research Alliance (CURA) project, they decided to do more interview with couples than with individual fathers alone.

"Our work is rooted in family systems theory and social constructionism" says McNeill. "We look at the family as an emotional unit whose members affect and accommodate each other and negotiate roles together. Understanding how the unit works helps us understand the experiences of the individuals as well."

In times of crisis, for example when a child's illness is first diagnosed, one partner, usually the mother, becomes very attuned to the emotional side of things, McNeill says. "Mothers often express more emotion and also focus on and respond to by the child's feelings more strongly. The father often then feels that he needs to be strong to support his child and partner. That's a common pattern, but we've also interviewed families where the roles are reversed. I recall one man saying he was the emotional one. He described his wife as a rock."

These complementary roles, can be highly adaptive and helpful to the family, McNeill says. "Someone needs to be very attuned to the emotional aspect of the situation, but the family has to survive in a practical sense as well." Here's an example. For children with juvenile rheumatoid arthritis, one of the health conditions included in McNeill's FIRA study, part of the treatment includes painful intramuscular injections administered at home by the parent. Sometimes the emotionally attuned partner finds it hard to administer those injections. In that case, the other parent may find it a little easier to play that role.

"In family systems theory we call this healthy equilibrium," McNeill explains. "Parents have worked out roles that they are comfortable with and they work well together. These relationship dynamics could be relevant for same-sex couples as well." However, if the parents are dissatisfied with the type of equilbrium in their parenting roles, it can greatly affect the parents' ability to care for their child together.

"We've seen situations where the mother becomes highly involved and ends up feeling burdened, wishing her partner were more involved,"McNeill explains. "But the father may have withdrawn because he feels excluded and has trouble finding his way of being involved. We've seen others where a very involved mother becomes depressed. The father worries about how the mother's mental state will affect the child and sometimes becomes critical of her as a result."

Clearly, these sorts of dynamics can have a profound effect on the overall functioning of the family and care the child receives at home.

"Most of our clinical work is about helping parents to adapt," says MacNeill. "By understanding more about the experiences of fathers and mothers, and how they work together and affect each other, we'll be able to do more to help mothers and fathers adapt and work out roles that help them provide the care their child needs."

Dr. Ted McNeill led FIRA's Fathers of Children with Special Needs cluster.


Dr. John Beaton (University of Guelph)

Mr. Frank Gavin (Father)

Ms. Gert Montgomery (Bloorview MacMillan Children's Centre)

Dr. David Nicholas (Hospital for Sick Children)

Their research involved in-depth interview with couples and individual fathers and mothers caring for children with spina bifida, cerebral palsy and juvenile rheumatoid arthritis. The Fathers of Children with Special Needs is one of seven research clusters included in FIRA's Community University Research Alliance project, funded by the Social Sciences and Humanities Research Council.