Child Life in Kenya: The Sally Test Child Life Program

Monday March 1, 2021

Children with cancer experience invasive procedures and stressful events throughout their medical care that can impact their ability to cope, inhibit their development and negatively affect their health and well-being throughout life. Child life supports effective healthcare and reduces trauma. Morgan Livingstone CCLS describes how WE C Hope is bringing hope through Child Life to children and their families in Africa.

This article is the first of three highlighting different approaches to retinoblastoma family support around the world.  You may also like to read:

My life as a Retinoblastoma Care Co-ordinator (Australia).

Childhood Eye Cancer Trust Support Workers: helping UK families and individuals through treatment and beyond

A young child sits calmly on a white chair, he is holding a light up distraction toy in his right hand, and his left hand is supported by his mother who is behind him. A medical team member with white gloves on is placing a brannula for intravenous access near the wrist of his left hand.

This young child is calmly focussed on the light up distraction toy in his right hand while his mother supports his left hand during IV access.

What Is Child Life?

“Child Life is about the children”.

Sarah Ellen Mamlin, retired Director of the Sally Test Child Life program.

Child Life Specialists are educated and clinically trained in the developmental impact of illness and injury. Their role helps improve patient and family care, children’s coping, satisfaction, and overall hospital experience.

Infants, children and youth confront a wide variety of stressful and potentially traumatic events that can impact their ability to cope during hospitalization. These experiences related to healthcare can lead to feelings of fear, confusion, loss of control and isolation that can inhibit their development and have negative effects on their physical and emotional health and well-being.

In both healthcare and community outreach, Child Life Specialists help infants, children, youth and families cope with the stress and uncertainty of acute and chronic illness, injury, trauma, disability, loss and bereavement. They provide evidence-based, developmentally and psychologically appropriate interventions including therapeutic play, preparation for procedures, and education to reduce fear, anxiety, and pain.

To learn more about the Child Life Profession as a whole, check out the Association for Child Life Professionals (ACLP).

History of Child Life in Kenya

Since 2006, World Eye Cancer Hope (previously Daisy’s Eye Cancer Fund) has been committed to building child life programming in Kenya. For children and families facing a retinoblastoma diagnosis, and for all children impacted by health challenges within the Kenyan healthcare system.

Annual Child Life clinical training programs started in 2008, with year-round clinical supervision and support.  The Sally Test Child Life program at Moi Teaching and Referral hospital in Eldoret, Kenya has grown greatly and is an essential service in all areas of pediatric healthcare at the Shoe4Africa Children’s Hospital.

As Child Life Director at World Eye Cancer Hope, I have facilitated all annual child life clinical trainings, covering a comprehensive range of topics.  From practical applications of medical play experiences for children of all ages, and non-pharmacological pain management strategies, to creating a distinctly Kenyan bead program recognizing each child’s procedures during hospitalization.

  • Palliative care
  • Medical play
  • Information and Diagnosis specific education
  • Developmentally appropriate play for hospitalised children
  • Impact of hospitalisation on children’s development
  • Preparation for procedures
  • Children’s development – theorists
  • Non-pharmacological pain management
  • Understanding children’s pain
  • Infant pain management
  • Infant development
  • Child Life supports for infants
  • Child Life Supports for children with special needs
  • Child Life supports for children with retinoblastoma
  • Child Life supports for burn patients
  • Child Life supports for oncology patients
  • Child Life supports for chronic conditions
  • Child Life supports on the neuro-ward: acquired and traumatic brain injuries
  • Child life in the NICU
  • Bereavement supports for siblings and families
  • Assessment and program planning
  • Positions for comfort during painful procedures
  • Use of Cloth Dolls in child life practice
  • Supervising child life interns and students
  • Teen programming during hospitalization
  • Research methods
  • Qualitative research in child life
  • Quantitative research in child life
  • Communication with pediatric patients and their families
  • Assessment and priority setting in pediatric psychosocial care
  • Navigating and supporting childhood anger
  • Supporting siblings
  • Infant massage in hospital settings
  • Codes/standards of professional child life practice
  • Healthy attachment during hospitalization
  • Sexuality and relationship teaching for teens during hospitalisation
  • Working and collaborating with medical team members
  • Writing effective conference abstracts and presentations
  • Grant writing for child life funding
  • Donation request letters
  • Legacy building activities at end of life – adaptations for Kenya
  • Developing a Kenyan Bead program
  • Celebrations while in hospital
  • Developing and creating child life preparation books

Each annual training session provides:

  • 1 week of intensive child life training lectures and hands-on learning
  • 1 week of specialised professional certifications
  • 1-2 weeks of in-hospital clinical supervision and assistance in building the child life supports and material resources offered at the Sally Test Child Life team in the Shoe4Africa Children’s hospital.

Supporting Children and Families

The Sally Test Child Life team works with over 200 children a day, including 50-75 children in the Sick Child (outpatient) Clinic and all inpatients remaining in the many wards within the hospital.

The child life team of 18 staff includes:

  • Certified Child Life Specialists
  • Child Life Specialists
  • Child Life assistants
  • Playroom Supervisors
  • Technology specialist
  • Teen program facilitators
  • Program Manager
  • Additional child life support staff

The main focus of the child life team is to support and implement child and family centered care during hospitalization.

Young patients put a brannula in the arm of a medical play puppet. They are wearing surgical gloves.

Certified Child Life Specialist Liz Kabuthi facilitates a medical play session with 3 young patients, teaching about brannulas using both real and play medical equipment.

Within that large focus are the smaller essentials such as enriched medical play experiences to educate and inform children and their families about diagnosis and expected treatments during their hospitalization. And giving children a chance to rehearse procedures to gain a sense of mastery of each experience they will endure.

General play is also provided within the ward playrooms to reduce stress while promoting coping and normalization of the hospital experience as much as possible. Within the play programming, a wide variety of creative and expressive arts activities is offered to children of all ages. Patients can express themselves in many different ways that may include drama, drawing, story-telling, puppets and masks, music, dance and clay.

The Child Life program also supports parents and caregivers through special weekly diagnosis specific question and answer sessions with a physician, a patient navigator and child life specialist. This regular gathering gives families a chance to ask questions openly, and discuss concerns with support from the medical team.

This has enabled the team to build better connections, rapport and trust with parents and caregivers.  They also have a chance to correct misunderstandings and misinformation that families may have about the diagnosis and course of their child’s care during hospitalisation.

A doctor is standing and talking to a group of mothers who are sitting in chairs, some holding their young children. The room is painted yellow and they are sitting beside a big window.

Oncologist Dr. Olbara and child life specialist Jayne Kamau with a group of families during a cancer-focused support session.

International Certifications for our Team

Through much hard work, the child life team were certified as infant massage instructors.  We hosted a special certification week for our team and members of the healthcare teams supporting babies’ needs during hospitalization.  Our infant massage training helps promote positive touch, reduces stress, improves relaxation, and fosters healthy bonding.  Even for the youngest babies in the NICU who face long hospitalizations and potentially painful procedures.

The Child Life certification exam was hosted at our facility in 2014, and we are proud to have Certified Child Life Specialists on our team.

A large group of people is sitting on the floor in a circle facing inward, with legs outstretched. They are holding practice baby dolls on their laps as they practice infant massage strokes.

Andrea Kelly, master infant massage trainer, hosts our entire child life team and guests for a certification class.

Expanding Child Life Training

The Sally Test Child Life program began offering annual child life internship opportunities to Canadian interns in 2016, and international practicum students in 2018. The main focus now will be on the growth of child life across Kenyan healthcare, and eventually across Africa. Through internships for Kenyan healthcare staff and enriched and rigorous training in Child Life, we hope to support and provide child life to all children in Kenya during their healthcare experiences.

In a grassy field, 15 people stand in a row in front of a long low building with a blue roof, white walls and large windows. There are 7 Caucasian women, 6 African women, and 2 African men. 3 of the women are wearing the same outfit of bright red skirt or trousers and colourful child life tunic. A young child peaks out from the centre of the group.

In front of the large child life playroom, the Sally Test Child Life Specialists and Dr. Aruasa welcome child life practicum students.

Sharing the Program and Child life Across Africa

Many of our child life team members have been presenting and sharing the news of Child Life at conferences and meetings across Kenya and beyond. Child Life specialists Jayne Kamau and Liz Kabuthi were invited to present at the 13th African Congress of the International Society of Pediatric Oncology (SIOP), held at the JW Marriott Hotel Cairo, in Cairo, Egypt on 6-9 March 2019. Liz presented about the different child life supports and play based opportunities the Sally Test Child life provides children with cancer diagnosis. Jayne presented the specific child life supports provided to young patients with retinoblastoma.

Both Liz and Jayne made our whole team proud, gaining much interest from many African nations interested in building child life teams and programs within their own countries. Attending with Jayne and Liz was our friend and colleague Bella Jaboma, who was to become our future child life intern from Hope for Cancer Kids charity in Nairobi.

We were devastated that, after a successful conference spreading the word about child life supports for children with cancer, Jayne and Bella died when Ethiopian Airlines flight ET302 crashed shortly after take-off on March 10, 2019.

I first met Jayne in 2008 at our earliest child life training sessions. Her passion was clear from the start. She embraced the principles and play-based approaches of child life, and became one of the first child life specialists in Kenya.  She was a skilled practitioner, able to explain complex cancer information simply so children and families could understand. She enabled more caregivers to make informed decisions about their child’s care needs during treatment, and children coped better with her support.  She was a much loved and valued member of the team, and her loss remains profound.

Jayne stands next to a poster she presented at SIOP Africa 2019 on child life supports in retinoblastoma care. She is wearing a pink skirt and blue shirt.

Jayne Kamau posing with her research poster about child life supports for children and their families facing retinoblastoma in Kenya.

Growth of Technology in our Child Life Program

With some funding and donations over the years, child life staff were able to offer tablets with special distraction apps and video game systems to enhance patient experiences during long inpatient stays. Even with a small number of tablets and game systems, we could see the benefit for patients.

Technology can be offered as a positive distraction, an effective preparation tool to help patients understand what will happen during the course of their hospitalization, and for play!  So, with additional support from Child’s Play Charity, we were able to add a new child life position, the technology specialist, in 2020.  Child’s Play is a charitable organization that donates toys and games to children’s hospitals worldwide.

The child life technology position facilitates greater implementation of technology in direct patient supports, and enhances the child life team’s ability to meet and improve overall patient needs.  These include:

  • Preparation for procedures
  • Positive distraction options during procedures
  • Educational/informational supported diagnosis specific teaching for better patient and parent understanding of the individual medical experience.

Creation of this unique position on our child life team was essential to improved management of all high and low technology we presently have within the program. It builds on our hope to increase access to technology for all staff and patients.

The Child Life technology Specialist is also responsible for

  • Creating new child life videos
  • Hosting daily and special themed gaming events
  • Assisting patients, families, and staff with use of a variety of old and new gaming systems
  • Providing overall gaming strategy
  • Training and technical support
  • Delivering new preparation books for patients having an operation, facing a new diagnosis, or to familiarize patients with a specialised area of care within our pediatric hospital, such as radiation, CT scan or X-ray.
An African man in grey pants and a light collared shirt stands in front of a giant poster of a galaxy.

Denis Chagira, our new child life technology specialist

One additional benefit of these technology-based prep-books is the ease at which we can now offer ALT-TEXT and audio descriptions of all images we include into all existing and future electronic patient procedure preparation books, videos and presentations.  This ensures accessibility for all blind and visually impaired patients, students, staff and extended family members.

Ongoing Development and Training

The COVID-19 pandemic has not slowed our team down! Full child life supports have continued to ensure children of all ages feel safe and supported even during these great challenges.  Distance clinical child life supervision continues year-round, despite pandemic restrictions.  The Sally Test child life team is in constant (almost daily) contact to discuss any issues or challenges they may face, and to celebrate successes.  From incredible group creative arts activities to the creation of new clinical preparation books for the new radiation machine and operating rooms!

When international travel is safe and permitted, we look forward to resuming our annual trainings and beginning some new and exciting research.  We are keen to study the impact and benefits of special artificial reality distractions in supporting children having painful procedures during cancer treatment in the resource limited setting. Stay tuned!

A Final Word

This video showcases the work of our child life team.  We continue to build advanced child life skills for our team members through professional development and training. We look forward to resuming on-site training when it is safe to travel again.  We hope then to host many child life interns at the Sally Test child life program, expanding child life support to many more children and their families coping with intense medical experiences across Africa.

Read More

This article is the first of three highlighting different approaches to retinoblastoma family support around the world.  You may also like to read:

My life as a Retinoblastoma Care Co-ordinator (Australia).

Childhood Eye Cancer Trust Support Workers: helping UK families and individuals through treatment and beyond

About the Author

Morgan and Doc McStuffinsMorgan Livingstone is a Certified Child Life Specialist and Certified Infant Massage Instructor/Trainer. She is passionate about improved child life and psychosocial supports for children and families affected by retinoblastoma.

As the Child Life Officer of World Eye Cancer Hope, Morgan contributes to the website’s Child Life sections, and speaks globally about child life supports for children with retinoblastoma. Morgan provided enriched multi-day child life programming for children of all ages at both One Rb World in Washington, D.C. in October 2017 and the Canadian Retinoblastoma Research Advisory Board meeting in December 2017.

Morgan also writes and creates resources for children and adults, and participates in child life research studies. She won the inaugural Innovation Grant at Operation Smile for developing an APP that uses Virtual Reality to prepare children receiving cleft lip and palate surgery for their operation.

Download Morgan’s helpful parent manual for supporting children’s worries using Worry Eaters.

Follow Morgan on Twitter

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