How to Overcome Challenges in Pediatric Life Care Plans?

Creating life care plans for pediatric patients is often a complex and multifaceted process. It involves careful consideration of medical, therapeutic, operational and moral factors. The life care planners have to anticipate and address the needs of children with diverse injuries and illnesses. These life care plans should be tailored to support the long-term well-being and quality of care to the children.

Through this blog, we try to outline the key challenges in pediatric life care planning and provide strategies to overcome them. Before delving into the challenges of pediatric life care plans, let’s first understand what it is.

What is a pediatric life care plan?

A pediatric life care plan is a document prepared for children with severe injuries, chronic illnesses or disabilities. It details their current and future medical as well as non-medical needs. It assesses the child’s medical history, current health status, and expected future care requirements.

Pediatric life care plans cover medical treatments, rehabilitation therapies, educational needs and home modifications made for them. It aims to provide a detailed path for the child’s long-term care by ensuring all necessary and accessible resources needed to support their quality of life and development.

Illnesses Pediatric Life Care Plans Cover

Pediatric life care plans cover a wide range of illnesses, injuries and disabilities to ensure support children with special needs.

1. Neurological Conditions like cerebral palsy, Traumatic Brain Injury (TBI) and spinal cord injuries
2. Developmental Disabilities such as ASD (Autism Spectrum Disorder) and intellectual disabilities
3. Genetic Disorders like down syndrome and muscular dystrophy
4. Chronic Illnesses including cystic fibrosis and diabetes mellitus
5. Orthopedic Conditions such as limb deficiencies and scoliosis
6. Sensory Impairments affecting vision and hearing
7. Respiratory Conditions like chronic lung disease and asthma
8. Cardiovascular Conditions as in congenital heart defects
9. Metabolic Disorders such as Phenylketonuria (PKU) and hypothyroidism
10. Pediatric Cancers

Key Challenges in Pediatric Life Care Planning

Preparing pediatric care planning involve a lot of challenges for the life care planners. Let’s have a glance at the various challenges in pediatric care here:

• Wide range of illnesses and injuries & difference in healing rates: Children may suffer from a variety of injuries and illnesses, such as fractures, burns, birth injuries, head injuries and so on. Each of this injury, illness or disability necessitate specialized care plans meeting their requirements. The healing rate of children differs from each other. This makes the pediatric injury care plan difficult to predict the recovery timelines and other necessary interventions
• Health conditions impacting growth and development: Fractures to the growth plate and deficiencies to the limbs can impact the physical growth and bone development. These conditions may demand for long-term monitoring and possible surgeries. Rare treatments such as leg-lengthening procedures would require opinions from specialized surgeons. This makes the life care plan preparation complicated.
• Unique emotional and psychological impacts: Children’s responses to emotional and psychological impacts differs from each other. They would require unique and personalized care and support. Predicting that would be impossible.
• Need for a longer life care plan and re-evaluation: Children have a longer life span than adults. Their life span includes multiple life stages and transitional stages such as puberty. Including the necessities for the diverse life stages and needs would be tricky. When the children grow, their needs would also change over time. The long-term care for children requires re-evaluation from time to time and adjustment to the life care plan.
• Impacts on future career opportunities: Usually upper-extremity injuries can affect the child’s future career choices. The child may need career counseling and support planning to move further in life. Assessing such needs and expenses would be difficult.
• Impact on the family and need for counseling: Serious and complicated injuries not only affect the child. It also affects the family members. Depending on the average needs, appropriate levels of counseling for the child and family should be considered. Avoiding overestimation is necessary. Therefore a comprehensive approach is necessary during the preparation.
• Estimating life expectancy: Accurately assessing the life expectancy of a child is challenging as there would not be any “crystal ball” figure. It would require systematic literature reviews and multiple expert opinions.
• Difference in long-term care needs: The amount, duration, and intensity of long-term care and therapy services can vary significantly from case to case. Determining these would require extensive justification.
• Projected evaluation and therapeutic modalities: Children might need physical, occupational, speech therapies. Regular evaluations for these therapies should be scheduled without affecting the child’s educational and daily life needs. It also needs to be highly realistic.
• Need for durable medical equipment: children light need wheelchairs and other facilitative devices. Justifying the need and cost of such devices and making sure the devices suit the children’s abilities and needs is complex.
• Fluctuating medication and supply costs over time: The planner should know the necessary drugs and their costs using verifiable data. For this, they should consider future cost fluctuations, considering geographic specificity.
• Cost and burden of care: Estimating the costs of home and facility care accurately is a complicated task. The planner should consider both private-hire and agency-procured services, and also the additional burden on families when hiring privately.
• Availability of the caregiver: Life care planner has to consider the availability of qualified caregivers such as CAN, LPN, or RN based on the child’s needs. They should understand the geographic and financial variations in hiring these professionals.
• Assessing the extent of parental involvement in child’s care: The life care expert has to identify the extent of parental involvement in child’s care. This includes the parents’ health, other children, employment status and their overall ability to manage extraordinary care needs.
• Need for temporary assistive care: Caregivers cannot work continuously in providing assistive care to the kid. It might lead to burnouts and loss of quality in care. To avoid that, temporary support care or respite care services might be needed. The planner should include amount and frequency of respite care and related expenses too.
• Future medical and surgical care: Certain treatments such as botulinum toxin injections, baclofen pumps, selective dorsal rhizotomy, contracture surgery, hip dysplasia surgery, and scoliosis surgery are potentially expensive. Deciding if they are necessary is a controversial one. The planner should justify their needs based on medical necessity and benefit.
• Transportation needs: Determining the transportation needs of the child is complicated. Planner should assess if they should include the full cost of a wheelchair-accessible van or just the modification costs. Else, they have to find out the availability of public transportation for disabled individuals in the specific region.
• Adaptations or modifications needed at home: Identifying the need for home modifications using guidelines from organizations like the Veterans Administration and deciding on the types of modifications can be bewildering. Estimating the cost of the modifications needs additional care.

How to overcome the challenges in pediatric life care plans?

Life care plan experts can overcome the challenges in developing a life care plan for children by following certain strategies discussed below:

• It is better to collaborate with a well-experienced team of pediatricians, orthopedic surgeons, neurologists, mental health professionals and other relevant experts to form opinion on the child’s injuries, illnesses and psychological impacts. They can help by providing tailored care plans for each types of injury or illness. Design interventions that are age-appropriate and consider the child’s various developmental stages.
• Try to implement regular growth and development assessments and form a timeline for potential interventions. Use of growth prediction models can assist in anticipating future medical needs and plan accordingly.
• Developing flexible life care plans can be useful, as it can be adjusted based on the child’s healing progress. Regularly review and update the plan to include changes in the child’s condition and recovery rate.
• Create a life care plan that includes long-term milestones and transitions. Plan for key life stages, such as puberty, transitioning to adulthood, and aging, and include provisions for potential changes in care needs.
• Regular review from all relevant healthcare providers can provide new insights on assessments, change in child’s conditions and advancements in treatments.
• Gather insights from multiple healthcare providers to ensure a comprehensive and realistic plan on the child’s treatment. Based on evidence and expert opinions, prepare the life care plan.
• A comprehensive approach addressing medical, educational and therapeutic needs can be beneficial. Coordinating with schools, therapy providers, and medical specialists can help in creating an integrated care plan.
• Including a career counseling and vocational training can provide opportunities for the child to explore different career options and receive support in developing necessary skills.
• Engage family members in the care planning process and give them with resources and support. Consider including provisions for family counseling and community-based support services.
• Use statistical models and expert opinions to estimate life expectancy of the children. Continuously updating the life care plan based on new medical research and advancements in treatments can be suitable.
• By evaluating the child’s daily schedule and educational commitments, integrate therapy sessions into the child’s daily routine.
• Comprehensive assessments should be needed to determine the appropriate durable medical equipment. Never forget to include documentation for justifying the need for each device and include cost estimates in the life care plan.
• To estimate medication and supply costs, make use of current market data and expert opinions. Include provisions for potential future cost changes and geographic variations.
• Create accurate cost estimates for home and facility care with the help of care agencies and financial planners.
• Creating a network of qualified caregivers, local care agencies and respite care can help in assuring non-stop care for the children.
• Assessing the capacity of the parents in providing care to the children, plan to provide additional support they need. Discussing with educators and neuropsychologists, evaluate the child’s educational needs and plan for necessary accommodations to support the child’s learning.
• Decisions on future medical and surgical care should be made after thorough evaluations and expert opinions. Documenting the medical necessity and expected benefits of each treatment can substantiate the value of care plan.
• Assess the child’s transportation needs and include the appropriate costs. Identify the availability of public transportation options for disabled individuals and ensure the child can access that without difficulty.
• Identify the need for home modifications, estimate their cost and ensure they meet the child’s long-term needs.

In brief, a pediatric life care plan should include a comprehensive, flexible and regularly updated approach to suit the ever-evolving needs of the children. A life care plan centering only on the child may not be fruitful. Including the family, assessing their ability, wellbeing and psychological needs makes the pediatric life care plans effective and worthy. Through careful planning, continuous evaluation, evidence-based practices, these life care plans can provide the support the children and their families needed.