Authors: (including presenting author): :
Cheung YTR (1), Fok MSW (1), Lam CMD (1), Cheung TYJ (1)
Affiliation: :
(1) Occupational Therapy Department, Tuen Mun Hospital
Introduction: :
The number of children aged from day to 19-years-old requiring pediatric palliative care (PPC) is up to 21 million worldwide. In Hong Kong, PPC service is at its early stage of development. In Tuen Mun Hospital (TMH), PPC Team was developed in 2016. The multi-disciplinary team works collaboratively with caregivers to tailor an optimal care plan for children with limited lifespan / under life-threatening situations. Members walk through the journey from diagnosis, to end-of-life and to bereavements along with children and their family.
Occupational therapy optimizes people’s ability to participate in activities of daily livings despite their physical or psychological condition, illness progression and activity limitations. This premise applies to the care model in PPC, Occupational Therapists (OTs) maximize children’s quality of life by assessing their ability and need, exploring what is meaningful and important to them and their caregivers.
Objectives: :
To introduce the Occupational Therapy Care Model in Pediatric Palliative Team
Methodology: :
Each pediatric palliative case differs in terms of physical and medical conditions, family culture and parents’ expectations. OTs collaborate with the team to set individualized goals with an ultimate target to improve their quality of life.
Most of the palliative children are hospitalized since birth, some of them require mechanical life support and receive stimulations only from medical equipment and nursing procedures. They have rare chance to experience warm hugs or listen to the traffic. Some caregivers wish but hesitate to bring their child back home due to incompetent caring skills and suboptimal home environment. Some do not imagine their child can go to school, sit up and learn.
One of our clients, diagnosed with Severe Bronchopulmonary Dysplasia, requiring full time Oxygen Therapy through tracheotomy for life support was recruited into the PPC team. OTs daily visited him to maximize his sensational exploration. Developmental trainings were given through play activities. Surprisingly, he changed from relatively passive to toys to actively explore and play. He was discharged from hospital at 3 years old. OTs supported home care by prescription of seating device and home modifications. Ongoing discussion was made to ensure parents’ wish was included. He started special school recently and continued training at school.
Result & Outcome: :
Pediatric palliative care is based on need. No matter how limited the lifespan the child will experience, OTs strive to instill meanings into the little lives and support their families along the journey.
