Medication Administration by Caregiving Youth:
An inside look at how adolescents manage
medications for family members
Maggie Nickels, MD/MPH Candidate
Julia Belkowitz, MD, MPH
Connie Siskowski, RN, PhD
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Caregiving Youth
Institute Conference April 27, 2017
Introduction & Acknowledgments
• MPH Capstone Project
• Quantum Springboard Award
for University of Miami
MD/MPH students
• Thank you to the staff of the
American Association of
Caregiving Youth®
• Thank you to our caregiving
youth participants
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Caregiving Youth
Institute Conference April 27, 2017
Background
• At least 1.3 million children are caregivers for a
family member 1
• Care recipients with chronic disease, mental illness,
disability, substance use, etc.
• Assist in both personal and medical care
• Studies have shown this role can have a negative
impact academically, psychosocially, and
developmentally 3-8
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Caregiving Youth
Institute Conference April 27, 2017
Background
• One-third of youth caregivers assist their family
member with medications 1-3
• No existing research on the specifics of this role
• Research on adult family caregivers shows that
many lack medication education and skills
▫ Adult caregivers of asthma patients  17% had been
shown proper administration 9
▫ Ability to follow medication instructions directly
correlated with level of education 10
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Background
Caregiving Youth
Institute Conference April 27, 2017
• Partnered with the American Association of
Caregiving Youth® (AACY)
• The Caregiving Youth Project (CYP) works
in partnership with The School District of Palm
Beach to annually serve more than 500 local
youth caregivers
▫ Skills building
▫ Counseling
▫ Support services
▫ Education
▫ Family strengthening
▫ Much more!
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Caregiving Youth
Institute Conference April 27, 2017
Research Questions
• How do youth caregivers obtain and administer
medication?
• What is their knowledge level regarding their
household member’s medication?
• What is the instruction process by which they
learn to administer medication?
• What challenges do these youth face in this role?
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Methods
Caregiving Youth
Institute Conference April 27, 2017
• Received Institutional Review Board approval and
parental/child consent/assent
• Participants recruited were middle and high school student
participants of the CYP; “medication handlers”
• Four focus groups were held: Two with high school students
(16) and 2 with middle school students (12)
• Semi-structured interviews including topics:
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▫
▫
▫
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Medication types
Understanding of medication function/disease
Education regarding administration
Challenges faced with this responsibility
Overall burden on the lives of participants
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Caregiving Youth
Institute Conference April 27, 2017
Methods
• Focus groups recorded and transcribed
• Content analyzed using grounded theory and
constant comparative approach with ATLAS.ti
software:
▫
▫
▫
▫
▫
Codebook created
Two researchers independently coded
Third investigator resolved differences
Initial codes consolidated into categories
Major themes identified
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Results
Caregiving Youth
Institute Conference April 27, 2017
• Key themes derived:
▫ Caregiver responsibilities related to medication management
▫ The process of receiving instruction
▫ Extent of caregiver responsibility
▫ Overall knowledge pertaining to medication and disease
▫ Challenges related to handling and administering medication
▫ Safety concerns surrounding medication management
▫ Emotional impact of this responsibility
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Caregiving Youth
Institute Conference April 27, 2017
Caregiver Responsibilities
• Tasks go beyond administering pills!
▫ Transporting pills from bottle  patient
▫ Organizational tasks
▫ Physically administering medication
• Majority were responsible for
multiple medications; some,
for multiple individuals
• Daily duty for most
• Scheduled vs. as needed
• Process of “checking in”
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Caregiving Youth
Institute Conference April 27, 2017
“Yeah … I learned through tricks
sometimes. She says she can do it,
and sometimes she didn’t do it. So I
say, I’m going to watch you do it and
make sure you do it. Sometimes she’ll
be stubborn.”
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Caregiving Youth
Institute Conference April 27, 2017
Receiving Instruction
• Care recipient often teaches child, initially
• “Team effort” is common
• Some learn by watching others
▫ Family
▫ Medical staff
▫ “It’s not really something I learned”
• Some take on an active role with medical staff
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Caregiving Youth
Institute Conference April 27, 2017
“Usually they ask my mom a lot of questions and I
answer them for her. And she’ll tell me what to say,
and then I’ll repeat it to them. And when they are
telling her what to do with the medication that she’s
taking, they – I listen to that because they usually –
they’re usually talking straight to me … Because they
know she can’t do it by herself, so they’re looking at
me …”
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Caregiving Youth
Institute Conference April 27, 2017
Extent of Responsibility
• Often shared responsibility
• Responsibility anticipated to be “passed down”
• Some identified as primary medication manager
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Caregiving Youth
Institute Conference April 27, 2017
“Since I don’t know how to put the insulin in and
I know he needs it, and my sisters are there, but
usually they’re really tired ‘cause they have to
go from school. But I’m just like, can you please
do it? ‘Cause I just really want him to get it. And
so I practically just force them to do it.”
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Knowledge
Caregiving Youth
Institute Conference April 27, 2017
• Difference between middle and high school students
▫ Middle school:
 “I know the insulin keeps him alive. I don’t know if the
pills do, though. And the insulin, it helps [him] to be
good.”
▫ High school:
 “I know that it helps balance blood sugar and it keeps it
elevated. So if you don’t take it, it won’t balance, it will
just get even higher. And then you can either have to go
to the hospital or something.”
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Caregiving Youth
Institute Conference April 27, 2017
Knowledge
• Ability to recognize intended effects of
medication varied with medication type
▫ Medication treating pain/hyperactivity  more
likely to note effect
▫ Medication treating chronic disease  less likely
to note effect
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Challenges
Caregiving Youth
Institute Conference April 27, 2017
• Noncompliance in care recipient
▫ Family members physically interfering
▫ “Checking in”
▫ Masking medication in food
• Difficulty understanding instructions
• Source of family conflict
• Side effects
• Overall, the perceived burden is small compared to
other caregiving responsibilities
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Caregiving Youth
Institute Conference April 27, 2017
“Some of the stuff that the doctor says is
kind of complicated because … he says
this thing and this thing but you have to
do this and this and I'm just like wait,
can you start over?”
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Caregiving Youth
Institute Conference April 27, 2017
Safety Concern
• Sharps disposal
“[I] just wrap them in paper
towels and put it in the trash.”
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Caregiving Youth
Institute Conference April 27, 2017
Emotional Impact
• Worry
▫
▫
▫
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Lack of compliance
Adverse reactions
Understanding instructions
Miscellaneous
• Missing out on other activities
• Request for a machine to take over their
responsibility
• “It’s always been this way”
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Caregiving Youth
Institute Conference April 27, 2017
“Sometimes I want to leave….because I
volunteer at a vet clinic, and she’s like, ‘No, you
can’t leave yet.’ But I have to get my hours so I
can certify. Either I miss my hours, or I give her
the medicine.”
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Caregiving Youth
Institute Conference April 27, 2017
Discussion
• The first US study to document the reality of medication
management and administration by caregiving youth
• Child caregivers require similar management skills as adult
caregivers, and may especially benefit from support 14
• Study on adult caregivers of dementia patients: caregivers
relied on written and verbal instructions, as well as reminder
systems 15
• Developing mobile apps
• Policy to increase home health care
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Discussion
Caregiving Youth
Institute Conference April 27, 2017
• Youth caregivers interact with medical professionals
▫ Screening by health care providers
• Adult caregivers also show lack of knowledge
▫ Caregiver knowledge of patient hemophilia treatment: One-third
did not know type of hemophilia; Less than half understood
medication mechanism 16
▫ Adult caregivers of asthma patients: Difficulty in remembering
medication names was significantly associated with increased
symptoms, use of rescue medications, and likelihood of missed
doses 18
▫ Provide education to youth caregivers
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Discussion
Caregiving Youth
Institute Conference April 27, 2017
• Limitations
▫ Small sample size
▫ Lack of specific information gathered
▫ Narrow age-range of participants
• Future directions
▫ Impact on health status of care recipient
▫ Public health implications
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Caregiving Youth
Institute Conference April 27, 2017
THANK YOU!
MAGGIE NICKELS, MD/MPH CANDIDATE
[email protected]
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References
Caregiving Youth
Institute Conference April 27, 2017
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Caregiving Youth
Institute Conference April 27, 2017
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