The Kind of Outstanding Care Kids Deserve

At Connecticut Children’s Medical Center (CCMC), every patient benefits from the care of top doctors and nurses who are devoted exclusively to children. But there are other ”specialists” who play an integral role in the health care process – family members. At Connecticut Children’s, families are critical in helping to create and maintain an environment of love and care. Each family member is an important partner in the healing process and a necessary support in achieving healthier outcomes. Family centered care integrates families throughout the entire clinical process – from initial diagnosis, to discussing options, to agreeing on the best course of action for their loved one.

According to Susan Maxwell, director of Perioperative Services and a pioneer of family-centered care at Connecticut Children’s, “At the heart of family-centered care is the belief that health care providers and families are partners, working together to best meet the needs of the child. It is switching the mindset from doing things for the patient and family to doing things with the patient and family. Parents and family members provide the child’s primary strength and support. Their information and insights will enhance their caregiver’s knowledge, improve care and ultimately help us design better programs and friendlier systems."

This approach is not only more inclusive and caring, but actually makes practical sense. After all, those who most need health care – the very young and those with chronic conditions – are the very people who are most dependent on their families and other support networks.

Maxwell points out, “Because many of our patients are too young to speak for themselves, there is a tradition at Connecticut Children’s of consulting with parents and including families in planning and care.” In fact, the family unit is central to the multi-disciplinary medical team. Families become partners in care and share in information completely and without bias or restriction. Families help set goals and are encouraged to participate in patient care and decision-making.

“At Connecticut Children’s, we talk about family centered care as soon as the family arrives. It's part of orienting them to the Medical Center,” says Maxwell. “We tell them, 'We want you to participate as much as you want.' For example, with an infant that might have some breathing difficulties, we ask, 'Would you like to bathe and feed your baby? Or do you want us to do it?' It's about figuring out what makes parents feel most comfortable. Some may just want to sit with their babies and stroke their little hands. Others are prepared to do everything for their children just as they do at home,” she commented. Another example is “rooming in.”

During a child’s stay at the Medical Center, parents are encouraged to stay with their child throughout their visit.

“We want the family to room in with the patient — and we have all private rooms to allow it,” commented Maxwell. “With family collaboration, our medical teams can truly customize patient care. The more they learn from the family, the more individualized care becomes. But the primary concern of every family member is always this: 'Please make my child better.' And, of course, this is the bottom line at Connecticut Children’s as well.”

At the Medical Center, family-centered care is taken very seriously. So much so that last year, Connecticut Children’s created a Family Advisory Board (FAB), composed of 15 volunteer families whose lives have been touched by their personal experiences at Connecticut Children’s. Since its inception, the Board has provided significant and valuable input to a variety of planning decisions at the Medical Center.

“This is not some blue-sky philosophy,” explains FAB Chairman Kip Dwyer. “It's really a practical and forward-thinking approach to the delivery of care. In fact, our FAB has already had a positive impact on the hospital and we are just beginning to set our own agenda. It's a very exciting time to be involved with Connecticut Children’s.”

The FAB has provided feedback on a whole list of subjects, from ideas on how to make it easier for people to get around the hospital to suggesting that family members be present on rounds.

“We have lots of support for this idea inside the hospital,” he adds. “Family-centered care is a big part of our future and everyone at the hospital has been very receptive and energetic.”

FAB families are from Hartford and surrounding areas throughout Connecticut. “Our Board is quite diverse,” notes Dwyer. “And it's important to all of us to continue that level of diversity as we expand the program.”

The families who make up the Medical Center’s FAB have a very definite idea of what the board should do at Connecticut Children’s. They have postulated the following mission statement as a guiding principle: “To bring the family's voice to the Patient and Family Experience Program in order to create a family-centered approach to everything we do.”

The FAB has also determined a clear vision of what their group should focus on, which includes promoting families as true partners in the design, delivery and evaluation of hospital services. Involving families completely in their children’s care produces results that are not just intuitive. Measured outcomes resulting from a commitment to family-centered care include fewer medical errors, less risk of infection and decreased length of stay.

Every day across Connecticut, children and their families are faced with a wide range of medical issues. As the state’s only academic medical center devoted exclusively to children, Connecticut Children’s provides families with a unique health care experience in a one-of-a kind setting. It’s the quality of care that should be expected for our youngest patients. Care that makes kids better — care they deserve.