Adolescents and Family Centered Care
Lenia Batas and Beth Lavrinoff
In pediatrics, Patient and Family Centered Care (PFCC) has been initiative for decades. In the past year, PFCC has also become an initiative for the entire hospital, including the adult population. Amongst the goals of a more patient and family centered care initiative, is improved patient and family satisfaction. At the top of the needs list of patients and families is communication with their providers-this encompasses not only being educated about their illness and treatment by their various providers but being adequately oriented to the hospital environment, routines and what to expect during procedures and tests. When patients and families feel communication has been optimal, they feel safe and secure and trust the care they are receiving. When your patient is a teenager or young adult-there are additional factors to consider.
The transition from adolescent medicine to adult medicine can be very challenging for families. Continuity with the same family centered approach would make the process more comfortable for all members of the family. Educating families about what they will experience and how things may differ from pediatrics helps to aid with hospital adjustment and treatment. In turn, the patient and family have a greater satisfaction with the overall hospital experience. Following is one family’s thoughts on their experience regarding transitions to adult care. Patients and families often reflect on their experiences with other family members and friends who then may choose to use the services at this particular facility or spread feedback to others not to use the services. In a competitive NYC environment, word of mouth is the most effective endorsement or denouncement of our services.
Ruby Egyud is a nineteen year old, bright young woman who was hospitalized for PANDAS related disorders last year on our pediatric inpatient units. As a result and side effect of her disease, she developed symptoms that caused her to be admitted to the adult psychiatric hospital here at Maimonides. Ruby’s mom, Sherri, reflects on the transition from the pediatric department to the adult section of the hospital in the following paragraph.
Going to the hospital can be a little scary for a young child. There are many ways that the pediatric department tries to make children feel more comfortable. The child life services bring in a team of specialists to help normalize the environment. They bring distraction techniques and other items including toys and games that help children cope well with the hospitalization or procedures. When kids get older and are considered adults by hospital standards some of the services offered by the pediatric department should still be offered to them.
Just because someone turns 18 it doesn't mean they are no longer apprehensive about a hospital stay. It doesn’t mean they no longer like to do crafts or play board games. It doesn’t mean that they no longer need a family member to spend the night with them.
Adults enjoy board games just as much as kids and can get lonely just as often. A little goes a long way when one is stuck in a hospital. If there were a stack of board games, playing cards and such available to adults as well as children that would be beneficial. Should a nurse ever find even a moment, maybe they can manage to step in and talk to the patient as a friend, if they have extra time, play an actual board game with them.
Having family close by is really important as well. It’s always easier to sleep knowing that a loved one is close by.
It can also be helpful that even before admission if the patient is briefed on what they should expect, what exactly their treatment would entail. At least then they can get a slight sense of familiarity instead of staring into a dark abyss of the unknown.
These things don’t seem like too much but it’s always the things that people won’t believe they will miss that are suddenly the very thing that is considered to be imperative to their very well-being. Medicine is always important but keeping a light and friendly air is important too.- (Ruby Egyud’s mother)
Orienting a family on what to expect for the hospitalization is vital to providing good quality services. Every person who walks into the room should introduce themselves and explain why they are coming in to see the patient. Not only is it important when a child is inpatient, but the preparation must begin from the entry point to hospital (ex: emergency department, the primary doctor, admitting, etc…) We are all responsible to help however we can in order to make a smoother transition.
Primary care doctors need to be informed about where they will be sending their patients so they may be able to in turn prepare their patients:
• Explain to the adolescents what the physical appearance will look like in the adult sections of the hospital.
• Introduce the transitioning patient to the new physicians and staff members
• Ask the patients what they feel would make them more secure in the process of transitioning.
• Describe what the differences will be in the patient’s care.
• Remember that the calendar does not always dictate how old or young a patient is. Just because an adolescent hits the age of 18 does not mean that his/her needs suddenly change that day.
• Offer to have child life or divisions involved in preparing the adolescent for the transition.
• Refer the family to another family that maybe recently has been through the transition so that they may gain a parent to parent supportive system.