Ames, J. L., Mahajan, A., Davignon, M. N., Massolo, M. L., & Croen, L. A. (2022) Opportunities for Inclusion and Engagement in the Transition of Autistic Youth from Pediatric to Adult Healthcare: A Qualitative Study. Journal of Autism & Developmental Disorders. doi:10.1007/s10803-022-05476-4 (Free full text)
Adapted Abstract
Background and Aims: This study identifies barriers to a successful transition from pediatric to adult healthcare at Kaiser Permanente Northern California (KPNC), a network of healthcare providers that serves 4.5 million members. Child patients in this network are automatically assigned to an adult provider when they turn 18.
Methods and Results: Researchers conducted 39 phone interviews with autistic youth (n=14), caregivers (n=17), and pediatric and adult healthcare providers (n=8) within the KPNC network. They identified three major themes: (1) Navigating the healthcare transition without guidance, (2) Health consequences of a passive healthcare transition, and (3) Strategies for inclusion and continuous engagement.
Conclusions and Implications: Starting the transition process early and providing support to individuals, families and professionals can help autistic youth and their families successfully navigate healthcare transition to adult services.
Findings
Autistic youth and families/caregivers want:
- A gradual transition process.
- Skills to manage their healthcare needs and information about transition.
- Sexual health to be addressed.
- A warm handoff between pediatric and adult provider.
Healthcare providers want:
- The right information, tools, and support to care for their patients.
- Longer patient visits.
- A transition care coordinator.
Summary
This study is a qualitative analysis of transition experiences within one medical system, Kaiser Permanente Northern California. They provide care to 4.5 million members. Three larger themes were identified with many sub-themes from 39 interviews.
Navigating the system without guidance
The first theme discussed in the paper is about patients and caregivers feeling lost in the system. Many Autistics in this study reported being automatically transitioned at the age of 18 without preparation. A few problems arose because of this. Autistics want autonomy but caregivers would also like to have some control over medical decisions. Autistics reported that disclosing their autism diagnosiscan be stressful. Some providers may come in with assumptions that are incorrect about an autistic patient. Caregivers worried that not disclosing an autism diagnosis could lead to some health problems not being addressed. Direct communication between the provider and their autistic young adult patients is required, but some caregivers would also like to be a part of that communication. Providers reported feeling uncertain about how to communicate with autistic young adults when the parent/caregiver is in control of the medical decisions because of conservatorship. Some caregivers and patients also talked about wanting a middle ground between full autonomy and conservatorship, but many healthcare practices do not have a framework for that relationship.
The need to be prepared for the transition was also discussed under the topic of “feeling lost in the system”. Many youths felt they needed practice with skills like talking with their doctor about adult matters, and felt they did not know what to expect or practice to be ready for adult care. Some caregivers wondered whether eighteen is the appropriate age for transition and if developmental delays should and could be taken into consideration before transition. Providers reported not having conversations about the transition unless the topic was brought up specifically during an appointment.
Health consequences of a passive healthcare transition
The second theme discusses how passive healthcare leads to crisis management and the neglect of sexual health conversations. Caregivers reported insufficientamounts of services and support in adult healthcare systems in comparison to the ones in the pediatric system. They want more proactive healthcare. Both caregivers and providers relied on the other to initiate the steps for transition of care and it never happened. Providers could not find the time in their scheduled visits to discuss transition as other health issues had priority. They did not know if they would see that patient again as they would be automatically transitioned in the system to an adult provider.
While Autistics reported going to their pediatrician for annual visits, they only wentto their adult doctor when something was causing a problem. The perceived dynamic of adult healthcare was more about crisis management compared to pediatric healthcare which was more about preventative medicine. This pose risks to the patients as they do not feel as comfortable talking to their adult provider about problems and therefore may have problems that go unresolved.
Sexual health is a big problem with a passive healthcare system. All three groups talked about how they were unsure who was supposed to give the information about sexual health to the youth. There is a need for autistic youth to learn how ahealthy sexual relationship is different from one that involves victimization and abuse.
Strategies for inclusion and continuous engagement
The third theme is about more engagement between patient, caregiver, and both pediatric and adult providers. Caregivers suggest a more gradual transition may improve experiences. A period where Autistics can talk with both providers at the same time could help familiarize them with the adult provider before needing to transfer the totality of their care. The option to delay the transition due to special circumstances is also important.
It may also be helpful for the pediatrician to recommend an adult provider to the family. A warm handoff from a trusted pediatrician may create a more welcoming and positive experience for the family. This could be a discussion between the care team and the family where everyone gets to know one another.
Providers reported feeling limited by appointment types and lengths. Theysuggested having a get-to-know-you visit before any formal healthcare consultation. Providers also felt like they needed more education on support for autistics, so that they could help their patients in a holistic manner and not just a healthcare one.
Real-World Implications
Transition conversations should start from an early age. More communication and information is needed between the patients, caregivers, and providers. Sharing care and having a transition manager could be helpful. Flexible appointment lengths and types and alternative to guardianship for help with healthcare decisions is also needed.
Limitations
- The perspectives reported are from one large facility with automatic transition age and may not be similar in other healthcare settings.
- The autistic participants were only those who could speak and answer the interview questions.
- The diversity of socioeconomic backgrounds, race and ethnicity were not considered within the study.
Text Slides
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A | B | C | D | E | F | G | H | I | J | K | L | M | N | O | P | Q | R | S | T | U | V | W | X | Y | Z
A
Accessible: When people with disabilities can easily use something. A setting or communication must work as well for people with disabilities as it does for everyone else.
Accessibility: What makes it easy for people with disabilities to obtain, understand or use.
Adolescence: Is from 10 to 19 years old. It is the time when a person is growing to become an adult.
Adolescent: A person who is 10 to 19 years old.
Adult Independence: An adult with disabilities is free to make their own day-to-day choices. For example: how to live, work, and take part in their communities.
Adult resources: Information and supports for adults.
Advocate (to): To speak up and make a case for what you need.
Affirmative Resources: Supports that are respectful and welcome a person the way they are.
Aggressive Behaviors: Words or actions that may hurt someone
Anxiety: Intense feelings of worry and fear.
ASAN: The Autistic Self-Advocacy Network is an organization run for and by autistic people.
Attention Deficit Hyperactivity Disorder (ADHD): A condition where someone:
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finds it hard to pay attention
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may act without thinking
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and needs to move a lot
Augmentative Alternative Communication (AAC): Ways, besides talking, that people show others what they want and need. This includes writing, pointing at pictures, typing, using signs, etc.
B
Behavioral Therapy: Therapy to change unhealthy or harmful ways people act.
Behavior Treatments: (See Behavior Therapy)
Bi-Polar Disorder: A disorder where someone’s mood changes between highs and lows.
Blood Draws: Inserting a needle into a vein to collect a blood sample for testing.
C
Capitated: Paying an amount of money based on how many patients are seen at a doctor’s office.
Caregiver: Someone who helps a person with everyday activities.
Case Management: Someone who helps make sure your services and supports work for you.
Community Programs: Activities or supports provided in your town in the same places as people without disabilities.
Community Resource Guide: A list of support services and resources in a local area.
D
Depression: Feelings of sadness or lack of interest in activities you once found enjoyable. It can change how much you sleep or eat.
Developmental disability services: Supports and programs for persons who are disabled before the age of 18.
Dietician: A healthcare professional who helps people eat healthy.
Dual Disability: Having more than one disability.
E
Executive functioning: How your brain works to focus, make a plan, remember and do more than one thing at the same time.
F
Funding: Money from an organization or government.
G
Gastro-intestinal: The many different parts of your body that food and liquid go through. For example: your mouth, stomach, or anus.
Government Policy-Makers: People in government who make rules and laws.
Guardianship: Guardianship is a legal word. Guardianship is when a court decides that a person cannot make their own decisions. The court then appoints someone else to make decisions for the person.
H
Healthcare professionals: People trained to provide healthcare. This includes doctors, nurses, therapists, etc.
Healthcare providers: People or places that provide healthcare. This includes doctors, nurses or hospitals.
Healthcare transition: When teenagers start making their own healthcare decisions as they become adults. They may change to a new doctor for adults.
Healthcare transition supports: Ways to make healthcare transition easier for teenagers and their parents.
Health Maintenance Organization (HMO). A group of doctors and hospitals who accept a set amount of money for services they provide.
Housing: A place where people live.
I
Insurance: A person pays a set amount of money each month to a company. Then, the company will help the person to pay for health care, like going to the hospital or getting medicine.
J
K
L
Legal Issues: These situations involve laws. A person might need help from a lawyer. In this study, legal issues were guardianship, wills and trusts
M
Mental health professionals: Trained people who help people with their mental health.
Medical Home: In a medical home, a team of medical providers manages your care. They listen to the patient to make sure they get the care they need. It is all about the patient.
Medical Providers: People or places that give medical care. This includes doctors, nurses or hospitals.
Mood Disorders:
N
O
Outcomes: Results.
P
Pap smear: A test where a swab is inserted into the vagina to check for abnormal cells.
Pediatric: Children under the age of 18.
Pediatricians: Doctors for children.
Policy: Rules people follow to know what to do. OR The ideas and beliefs used by a government or group when making decisions.
Post-secondary education: Opportunities to learn after high school. This can include trade programs, college, or any other learning opportunity.
Primary care: The medical office which is the main point of contact for a person’s medical care. It includes basic medical care like annual checkups and shots.
Preventative Healthcare: Healthcare that keeps you healthy, like regular check-ups and routine testing. Healthcare to prevent a condition from getting worse.
Privacy: There is a federal law that says a person decides who can look at and get a copy of your health information.
Q
R
Reactive Healthcare: Getting medical care after you are sick. Not getting healthcare, like a vaccine, to prevent an illness.
Rectal exam: Wearing gloves, doctor puts a finger into the patient’s rectum to feel some internal organs.
Resources- Adult: Information, services and supports just for adults.
S
Safer sex: Ways to prevent pregnancy and avoid sexually transmitted infections.
Screening: A test to find out if you have or are at risk for a health condition
Shared care: When a pediatric and an adult healthcare provider work together to care for a patient
Schizophrenia:
Seizures: A sudden electrical event in the brain
Self-care: Skills used to take care of yourself.
Sensory sensitivities: Being more aware of and sensitive to your environment. For example, more aware of and sensitive to smells, sounds, touch, brightness, quick moving.
Sexual Health and Wellbeing: the physical, emotional, and social aspects of expressing one’s sexuality.
Sexually transmitted infections (STI): Infections that you can get through sexual contact.
Shared Care: Medical care from a group of providers who work together to treat you
Social workers: A specialist who helps you meet your basic physical, mental and emotional health needs. Some do counseling. Some connect a person to services.
Special Educators: People who teach children with learning differences
Specialists: A healthcare provider who treats specific conditions, or works with a certain area of the body.
Supported decision making: Helping a person understand their choices and make their own decisions. Supported decision making is not like guardianship. With guardianship, the guardian makes decisions for the person.
Supporter or Support Person: Someone who may go with the person to appointments.
STI Testing: Medical tests to find out if you have a sexually transmitted infection.
T
Taking Blood Pressures: To measure how strong blood is moving from your heart through your your body
Telehealth or Telemedicine Visits: Meeting with your medical provider on a video call.
Transition Care Coordinator: The person who manages services for a patient moving into adult care.
Transition Services Program: Ways to help a child transition to adult services
Transportation: A way to get from one place to another.
U
V
Vocational programs: Support and training to help a person find and keep a job.
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W
Waiting Room Environment: How a waiting room is set up to make a person feel welcome and comfortable.