Special-needs children: A parent’s perspective
Another aspect of family-centered care is allowing parents a sense of participation and ownership in their child’s care. When Betsy Boggs’ 12-year-old son had complications from severe cerebral palsy, the terror of the experience was lessened due to the paramedics’ inclusive attitudes.
When her son was taken into the ambulance, Boggs accompanied him. "There was never a question about whether I would go with them," she said at the 1996 National Emergency Medical Services for Children Conference in Washington, DC. "I climbed in the ambulance and a para medic handed me the ambu-bag and told me how to do it while he did chest compression. It was a scary experience, but it felt good for me to be doing something and feel like I was helping."
In the ED, Boggs and her husband remained in the room to observe the resuscitation efforts. "It was terribly traumatic, but we saw the effort that was going into resuscitating him," she said. After a half hour, the Boggs made the decision to stop. The physician arranged for the parents to spend some time alone with their son, and then took them to a quiet, private room. Today, Boggs credits her peace with her son’s death to the communication and support that took place in the ED on that day.
After her son’s death, Boggs began working with the department of pediatrics at Michigan State University in East Lansingas a community-parent liaison. She also participates in ethics conferences with training residents at the local hospital. "I feel it’s a responsibility and a privilege to share [what I’ve learned from this experience] with other people," she said.
Laurie West, a mother in a tiny rural town near Lansing, Michigan, worked with local EMS to prepare them for caring for her 10-year-old son, who has an unstable airway. "They were very willing to have us come in and talk about our son’s needs," she says. The family distributed 5 x 7 index cards with medical instructions to the local ambulances and public school. "So if there is a crisis and they’re dispatched, they’ll know what to expect," she says.
When the Wests moved to a new community in Michigan, they contacted local EMS. "I told them about my son’s problems, and we went from there." An EMS volunteer who also works for the school system was a helpful contact. "We had to stock the ambulance with 8 [French] catheters because they had 12s and 14s for adults," she recalls.
The Wests felt it was important to educate local paramedics about their situation. "This way, they knew our child had a trach and oxygen. As his parents, we’re his primary care providers, but we use the paramedics for emergencies when we need to," says West. "It’s a very different approach than someone who just brings their child in when they’re acutely sick."
The arrangement benefits both parties. "The paramedics understand that they’re there to help us take care of him," she explains. "They’re comfortable with it and so are we." However, a collaborative approach may not be acceptable to all emergency medical personnel. "It’s not necessarily an easy concept to have people buy into. Normally, they’d come in and be calling the shots, but in this situation, we manage his complex airway every day."
It’s worth being persistent to achieve a collaborative relationship, she says. "It definitely took us being assertive," says West. "We had to tell them, We want to be a part of this, and you kind of have to let us, because we’re his mom and dad and we’re not going anywhere.’"
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