Fort Worth, TX,
20
March
2023
|
16:49 PM
America/Chicago

Child Life Specialist Shares Why Family-Centered Care Matters

Child Life Series: This series will discuss the pillars of Child Life  – emotional safety, family-centered care, and play - within the hospital environment and how Child Life serves patients and families.

By Ashley Pagenkopf, MS, CCLS, Child Life Specialist at Cook Children's

Family-centered care is a pillar of Child Life Services and holds high value within our Cook Children’s system. We must consider each person in a patient’s family.  The idea of family systems theory is that when one person is affected by a circumstance, the whole family is affected. Everyone feels the experience in some way. Child Life

Recently, my family had the opportunity to receive services from an organization that serves patients and families with ongoing health care needs. This organization sends a box each month for a year to the patient, but they also include items for the patient’s parents and siblings. The first box we received had T-shirts for all of us with individualized cards and small gifts. My girls each received an envelope from this organization full of Valentines from lots of people.

This organization connected us with another organization that provides birthday cakes for patients and their siblings. Each of my daughters received the most stunning cakes donated by local bakeries for their recent birthdays. Both of these organizations encompass the true meaning of family-centered care, by caring for the whole family.  

Child Life Specialists focus their care not only on the patients that we serve each day but also on the other children in their families. It may be siblings, cousins, best friends, or others. Whoever may be impacted by the experience of the patient should also be cared for and receive services. Often, Child Life Specialists will provide the assessment, preparation, support, education and play for siblings and other children within a patient’s support system.

The emotional safety of the whole family matters. We want to consider where each person finds themselves during the current experience. Family dynamics, past medical experiences and traumatic experiences, the family’s beliefs and more help child life specialists provide the best services to each family member. While the patient may be coping very well with their current circumstance, it is possible that a sibling or parent is having a very difficult time and their needs may be different than that of the patient.

Years ago, my youngest daughter was admitted to the NICU following her birth. At the time I had a 2-year-old and a 4-year-old at home. My oldest was allowed to come up and visit, meet and hold her newest sister, but my middle daughter was too young for the visitor guidelines in the NICU. We did everything we could to make that time better for everyone. The girls would come to the hospital and eat meals with me while I stayed at the hospital. We frequented Build-A-Bear and made the most of the indoor and outdoor playground.

When one family member has a medical crisis, the rest of the family juggles to handle it all. My middle daughter really struggled because, at the time, she was almost fully potty-trained, but this time caused her to regress.  She was so ready to meet her sister and have her mom back at home. She melted down at every good-bye and every greeting. This is the perfect circumstance for Child Life Specialists to help create some bridges for the family. We took pictures and shared them with her and told her exactly what her sister was experiencing. She drew pictures for her baby sister and helped build her a bear at Build-A-Bear. Each thing that we did, helped us acknowledge that she was a part of this family unit even when we couldn’t all be together.

Supporting caregivers, parents and siblings

In addition to the patient, we want to provide preparation and support to the caregivers and siblings of each family as well. We want everyone to understand the steps and reasons for the medical care we are providing. When the patient is getting an IV, it is important for the sibling observing to also know what is happening and receive some preparation and support around this procedure. When a family member visits the ICU for the first time, it is helpful for child life to prepare them for what they will see and hear in the unit. Child Life

It is also important for caregivers and siblings to be educated about new diagnoses and understand at the same level as the patient. Child Life Specialists can provide medical play and education to siblings or close family of a patient. Child Life Specialists can include siblings in debriefings of traumatic experiences and often in bereavement situations while helping them process what they may be feeling and experiencing.

We also want to provide normalization to the family as a unit, such as utilizing volunteer services while a caregiver attends a sports function for a sibling. We also provide developmentally appropriate play for siblings while they are visiting to make sure that activities are available not only to patients but to their siblings and families as well.

At Cook Children’s, we strive to provide family-centered care in all areas of the medical center. From sibling support groups to camps to parent mentors. We also have several ways that we support families and siblings.

Family Centered Care programs and resources at Cook Children's

 Family Centered Care at Cook Children's provides many programs, including the Parent Mentor Program, the Family Resource Library and our Parents as Partners program.

Our parent mentor program provides visits and phone calls to inpatient parents and caregivers to offer support and fellowship. Our Parents as Partners program includes our Family Advisory Councils that you will find throughout the medical center in different areas and departments. Involved families can help guide and direct our initiatives utilizing their own experiences. Parent support groups are also returning post-COVID. Cook Children's also has a new initiative for self-care for families.

We also have a whole program for siblings called Sib2Sib created by Child Life Specialists. This program provides so many opportunities for siblings and they are currently working on creating a website just for siblings. We have resources that include a sibling tour of the hospital led by Brie and Steve, two of our facility dogs. We also have information available for developmentally-based sibling needs. There is also the upcoming opening of a Sibling Support Center dedicated solely to the siblings that we serve every day. For questions about sibling services, you can contact Sib2Sib at sibprogram@cookchildrens.org.

Child Life Specialists advocate and strive to ensure the emotional safety of the entire family unit. These experiences touch each person in some way, and it is important to acknowledge each individual’s needs as well as the needs of the family unit. Cook Children’s is dedicated to providing family-centered care in every situation.

Get to know Ashley Pagenkopf

Ashley PagenkopfAshley Pagenkopf is a Child Life Specialist in the Emergency Department at Cook Children's Medical Center. The Child Life program at Cook Children's offers a variety of services, all designed to make your experience at Cook Children's the best it can be. Our services include educating, preparing and supporting your child through tests and procedures, as well as coping with any life challenges you and your child may face. Child Life specialists work with kids and families to make their visit to the medical center easier and more comfortable. We offer your child and your family an opportunity to express and work through any fears and concerns you may have. We'll also provide an explanation about what's going to happen during your visit and work with parents, brothers and sisters and other family members who may be involved in your child's daily care.

About Child Life at Cook Children's
 

Coming to our medical center, whether for a stay, day surgery or ongoing treatment at one of our specialty clinics can feel overwhelming and even scary to our young patients. Children and teens of all ages can feel stressed or worried during their visit. The unfamiliar environment, loss of control, fear of pain and lack of routine are among the most common anxieties young patients feel during a health care encounter. The Child Life specialists at Cook Children's are here to help.

Child Life specialists work with kids and families to make their visit to the medical center easier and more comfortable. We offer your child and your family an opportunity to express and work through any fears and concerns you may have. We'll also provide an explanation about what's going to happen during your visit and work with parents, brothers and sisters and other family members who may be involved in your child's daily care.

As a part of our commitment to family-centered care, Child Life specialists work with your child's health care team to advocate for and ensure your child's and your family's needs are addressed in the most nurturing atmosphere possible.

The Child Life program at Cook Children's offers a variety of services, all designed to make your experience at Cook Children's the best it can be. Our services include educating, preparing and supporting your child through tests and procedures, as well as coping with any life challenges you and your child may face.

Our Child Life specialists and activity coordinators also provide meaningful play and recreational opportunities for patients and siblings visiting the hospital to promote growth, development and some much needed fun. Best of all, the services are available for free. Child Life services include, but aren't limited to:

  • Activities and toys for families to engage in while they are in their hospital room
  • Developmentally appropriate teaching about diagnosis, treatments and life changes
  • Opportunities to desensitize and explore real medical equipment through play (medical play)
  • Preparation for medical exams, procedures and surgeries
  • Assistance with coping strategies, distraction and/or support during stressful events
  • Support to siblings and other family members visiting a patient
  • Celebration of birthdays, milestones, holidays and essential life experiences
  • A visit to a child's school after life-altering injury or chronic illness to help classmates understand and make it easier for the patient when returning to classes
  • Developmental assessments and referrals to community resources
  • End-of-life support to patient and family as well as bereavement support for family members
  • Child Life Zone is a treatment-free fun zone where kids, teens and family members can go for games, art, music, reading and relaxing
  • CARPE (Creative Artist in Residence Programme) connects patients to the art of healing through creative expression
  • Provide information about hospital amenities