Family TLC helps the medicine go down
Family-centered
care. It's not a new procedure requiring high-tech equipment, and it hasn't
been featured on "PrimeTime Live" -- but maybe it should.
For more than a decade, involving families in the care of children has been -- and remains -- a priority at Loma Linda University Medical Center and Children's Hospital. Only today, it has a formal name -- family-centered care.
Further, nationwide research has been conducted to validate the effectiveness of the activities involved in family-centered care. But to parents, what matters is that family involvement helps their sick child be more comfortable while easing some of their own stress.
Change benefits families
It may seem difficult to believe that just 30 to 40 years ago, parents were restricted access to their child in the hospital and were at times actively discouraged from visiting them.
Studies have found that in 1954, only 32 percent of New York City hospitals with pediatric beds permitted daily visiting; and 35 percent allowed visiting only once or twice a week.
Today, the majority of parents accompany their child into the hospital and stay by the bedside for many hours a day.
"The concept of family-centered care evolved from the recognition that children benefit from the continuous presence of their parents," says Linda C. Johnson, PhD, RN, CNAA, executive director of nursing for the Children's Hospital. "However, the success of parental involvement is dependent on both parents' and staff's attitudes, enthusiasm, and willingness to work together," Dr. Johnson adds.
In effect, this has required a shift for the health professionals from "we know best; we are the experts," to a"partnership" where health professionals, child, and family work together for the best outcome for the child and family.
Team members make a difference
Family-centered care involves many professionals at Loma Linda including administrators, chaplains, child life specialists, home health and hospice specialists, nurses, physicians, rehabilitation specialists, social workers, and unit secretaries, to name a few.
"Overall, it's the little things that make up family-centered care," says Leslie Anne Young, MS, CCLS, director of child life services. "We take time to discover the needs of the family--not just the patient."
However, "needs of the family" is a very broad term, Ms. Young explains. Needing attention is the child who is a patient, as well as siblings, parents, and extended family members, in addition to helping the parents understand what the child is feeling.
"It becomes very entwined, yet it is so important for both the care of the patient and the family," Ms. Young continues.
Traditionally, the chaplain was the sole provider of nurturing or spiritual care to a patient or a family in the hospital. At Loma Linda, Children's Hospital chaplain Tim Evans, MDiv, notices more of a cross-training of roles.
"Patients and their families are very appreciative and open to expressions of spiritual care by clinical team members," Mr. Evans shares. "When a physician prays with a patient, most families aren't expecting this, and it makes a big impression. It's very powerful."
Further, Chaplain Evans believes that caring for the whole family is a natural way to care for the patient because the family will bring continuity once the patient leaves the hospital.
Examples of family-centered care
Klasses 4 Kidz, Teen Connection, Candlelighters, Cards 4 Kidz, Bring a Smile, and just about every kind of support group one could imagine -- these are just a sampling of programs that were developed for the sole purpose of taking care of the whole family.
Some of the ways Children's Hospital is family friendly include shower, laundry, and breast-feeding rooms, a large family room for parties, and a reclining chair in every room enabling parents to be with their child 24 hours a day, if they wish. Additionally, on the oncology/hematology unit, there is a break room available for parents which, among other things, contains a library of materials on grief and on loss of the health of a child.
Naturally, child life specialists play a pivotal role in taking care
of the special needs of children -- both patients and siblings of patients.
Therapeutic play intervention, for instance, is available for children
who will experience a procedure, or to explain what is going to happen
to mommy or to a little brother who
is in the hospital.
In the neonatal intensive care unit (NICU), child life specialists work with siblings to help them understand, for example, why their new baby sister hasn't come home.
"Relieving fears and misconceptions of children, their siblings, and parents is a big part of our job," Ms. Young says.
To try to help foster a sense of consistency and continuity, parents are encouraged to do many of the routine things they would do for their child at home.
"From the very beginning, we make sure the family feels like they are part of the team," says Joyce Volsch, MS, RN, nurse manager of unit 4800.
Depending on the unit, this could include feeding, changing diapers, or playing with their child. However, parents are never asked to do any medical procedures, especially those that will result in pain.
"Comforting the child is the parent's main role," Ms. Volsch explains.
Education is another area where the family is heavily involved. Nurses spend time helping families understand the disease and the importance of treatment.
"When parents are given the time to learn about the treatment of their child, it makes the transition to home much easier," Ms. Volsch notes. "Knowing they are comfortable, for example, giving their child's chemotherapy medications once they are discharged from the hospital, also cuts down on our anxiety when we send that child home."
Another item of importance is sibling visits, which are often allowed after a previsit with a child life specialist.
"Children need to be prepared for what they're going to see," says Alisa A. K. Palmer, MSW(c), child life specialist. "Siblings may be seeing their parent or sibling vomiting, seeing them with significant hair loss, or they may incorrectly assume their loved one is dying because he or she is in the hospital," Ms. Palmer says.
Kangaroo Care in the NICU
Kangaroo Care -- which is infant-to-parent, skin-to-skin holding--is provided at Loma Linda's NICU to increase parents' level of attachment and involvement with their baby.
Kangaroo Care started in Bogota, Columbia, due to a shortage of equipment and incubators to care for stable but small infants in the 1980s. There, the infants wearing only diapers were strapped to their mothers/fathers/other family members' chest 24 hours a day.
Today, some of the proven benefits of Kangaroo Care include: temperature stabilization, improved weight gain, happier babies/families, decreased apnea, faster to nipple/breast-feeding, and earlier discharge.
"We try to get parents involved with their baby because we know they can make a difference," notes Fiona Wong, RN, CN2, staff nurse in the NICU.
"Often parents are overwhelmed with their tiny baby who has multiple tubes hooked into his or her little body," Ms. Wong explains. "It's important to make them feel comfortable with their child. Soon, they realize their baby isn't as fragile as he or she looks."
Alonso Villanueva and Marie Rivera of Moreno Valley, California, find the contact with their 6-week-old, 2-pound, 7-ounce baby very important.
"When we get to hold him skin-to-skin like this, it feels like he's really a baby," says Mr. Villanueva. "To feel his body warmth against my chest -- well, it just makes a big difference to me."
Family helps others learn to grieve
Lynn and Dennis Doyle and their four children know about hospitals. In 1986 at age three, their son Michael lost his 10-month battle with neuroblastoma, a rapid-growth tumor that affects the nervous system.
"Until you have experienced the loss of a child or an ill family member, it may be difficult to fully understand the importance and necessity of family-centered care," says Lynn Doyle, a former resident of Alta Loma, California.
Eight years ago, the Doyles started a bereavement support group in their home which came to be known as HOPES (Healing of Parents Experiencing Sorrow). Presently, the group meets at the Children's Hospital and has served as a strong reference to more than 150 parents who have lost children. Also from their efforts, a program has been created where nurses can be trained to become HOPES counselors.
Today, the Doyle family feels strengthened by the experience of knowing and losing Michael.
"Being able to help others journey through their loss has further assisted in our own healing," Lynn Doyle says. "Maybe that's why we're here on earth," she concludes.
Camp Good Grief helps kids share experience of loss
When children experience the death of someone close to them, they have a particularly difficult time expressing their feelings.
Camp Good Grief was created by the child life and nursing staff to provide a unique and effective method of helping the deceased child's siblings.
Sponsored by the Loma Linda University Children's Hospital Foundation, this three-day camp is designed to aid siblings in understanding and expressing the loss of their brother or sister with other kids their age who share the same experience.
"Children need assistance to grieve," points out Dorothy Clarke Brooks, MA, CCLS, child life specialist. "This camp provides an environment for helping them to work through their feelings."
Nineteen children attended the first Camp Good Grief held last August at Camp Cedar Falls in the San Bernardino Mountains. In addition to swimming and other fun activities, group activities with grief time were incorporated into each day.
For example, each camper made a grief box and decorated it using color and craft supplies to make words and pictures which reminded them of their brother or sister. When they got home, they could place objects which belonged to the sibling inside the box.
"The activities helped these kids make friends with each other right away, because they could relate and understand each other's grief while having fun," concludes Ms. Palmer.
Ashley, a 12-year-old camper, lost her younger brother when he was two.
"We do so much here," Ashley says. "We all [the campers] share everything and do a lot of fun stuff. These kids are my age and feel the same things I feel."
Plans are being made to expand Camp Good Grief this year so more children may attend. Proceeds from the fourth annual Loma Linda University Children's Hospital Foundation Gala held last February will benefit Camp Good Grief.
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Revised
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