1. Impact of Disability on the
Family
by Jaci Berthiaume, Kayla Hein, Jason
Krupka & Nate Reynolds
2. Heads Up: Who Am I?
Choose one person to hold the card.
The rest of your group members will give clues about who you are.
You have 2 minutes to figure out who your celebrity is.
4. David Beckham
12 year old son, Romeo, has epilepsy
The flash of a camera induces an
epileptic episode so paparazzi cannot
use flash
5. Stephen Hawking
At 21 Hawking was diagnosed with a rare early-onset slow-progressing form of ALS
Hawking stated that the engagement gave him "something to live for"
His disabilities meant that the responsibilities of home and family rested on his wife's
shoulders
Hawking's marriage was strained for many years as Jane felt overwhelmed by the
intrusion into their family life of nurses and assistants
6. Franklin Delano Roosevelt
The 32nd President of the United
States
Diagnosed with Polio at 39
Eleanor Roosevelt played major
role in convincing FDR to run for
re-election
Learned to hide his disability so
public did not lose faith in him
7. Objectives
1. Discuss the impact of disability on the family as a unit (emotionally, financially, socially)
1. Compare and contrast the different stressors of caring for:
a. Child born with a disability
b. Relative/partner/spouse with a disability
c. Elderly parent with disability
1. Discuss the common stresses of dealing with the health care system.
1. Examine caring for the caregiver and the impact that long standing care giving can have on an
individual and family.
1. Identify the role of the PT as an advocate and an assist for the family to identify potential
resources (e.g. respite care).
8. Pre-Quiz on Overall Impact on Families
1. If all family caregivers were paid for their informal services, it would cost how much
on the health care system?
1. What percentage of households in America take part in caregiving for adults of >50
years old?
1. How many informal caregivers are there in America?
1. What is the fastest growing age group in America? (Over what age?)
1. What percentage of written educational material is inappropriate for patients and their
families?
9. Kayla’s Story
- 2001, boyfriend’s father experiences severe
back pain and retires after 20 years in
Corrections
- Mother goes back to work 4x/week
- Progresses to distal LE weakness
- Foot drop & “The Shakes”
- Currently requires RW to get around at 58
?
10. QUESTION 1
What percentage of caregivers have quit
their jobs or reduced their work hours in
order to care for a family member over the
age of 50?
37%
11. Financial Impact of Disability
- Adaptive Equipment
- Assistive Devices - Home Modification?
- Medication
- Insurance
- Therapy (of course!)
- Children
12. How Does This Affect Us?
Caregivers = Our HealthCare Partners!
- Managing medications
- Learning to monitor vital signs
- Driving to and from doctor’s appointments
- Helping with ADL’s (cook, clean, dress, etc)
14. Emotional Impact of Disability
Family Roles Altered
Bring closer or Tear Apart?
Guilt
Shame
Stress
Worry
Anger
Anxiety
Uncertainty
Sadnes
s
15. Social Impact of Disability
Isolation from friends and family!
Attending public events
Holidays and Traditions
16.
17.
18. As a parent...
Scenario 1:
Your new born child is born a congenital quadruple
amputee... What are some of the challenges you face trying
to help them grow up to be indepent?
Scenario 2:
Your son is born w/ a rare disease and you have 2
daughters as well. How does this affect the dynamic of
your family unit?
Scenario 3:
Your 11 year old son, who loves to play sports, is
diagnosed with osteosarcoma. MD presents you with
the option of a rotationplasty or above knee
amputation… What influences your decision?
Scenario 4:
You son is a Division 1 athlete, a potential professional
athlete, and is diagnosed with osteosarcoma during his
senior year of college. First team all-conference both
sophomore & junior year. Do you perform a total TKR
to definitively irradiate the cancer or a partial knee
replacement w/ chemo to keep his dream intact?
23. The Impact of Disabilities on Parents
The role as an Advocate
The Emotional Rollercoaster
Mourning
Depression
Guilt
Anxiety
Envy
The decreased in career mobility
24. The Impact of Disability on Siblings
Positives
The sibling bond helps with morale
Compassion & Companionship
Desire understand the illness
Negatives
Guilt
Fear
Yearn for life as it once was
25. Jaci’s Story
1997: Dad legally “disabled” - DDD
Hepatitis C diagnosis: periods of
treatment at Mayo Clinic
January, 2003: Leukemia diagnosis
Mom stopped working to go to all
appointments and become full time
caregiver
“Doctor Sherrie” - advocacy
26. Stressors of Spousal Disability
May bring spouses closer together
Altered relationship
Bills, household responsibilities
May feel well-spouse is “taking over”
Different kind of grief
Older spouses
Aging, physical decline
No other roles outside of
home
“I’ve tried so hard to tell myself that you’re gone. Though you’re
still with me, I’ve been alone all along.”
27. Jason’s Story
Upon diagnosis "have you ever thought about Alzheimer’s?”, and given a script
“We had tons of questions, and the unknown was overwhelming”
“Not knowing what to expect was scary”
Health care workers need more education and understanding with
dementia/Alzheimer's
Realization this person is part of a family, not just another bed to move.
“Being on call 24/7 meant whenever the phone rang I would tense; I felt like
wasn't able to relax”
“I didn't know how to balance the two households to make sure everything was
taken care of and happy.”
28. Stressors of Elderly Parents with Disability
● Family
○ Depression, frustration, anger
■ Both spouse and children affected
○ Limited time for other loved ones
○ Postpone having children
● Financial
○ Increased health care costs have resulted in a decrease in saving for retirement
○ Difficulty paying for basic necessities (from 18% to 28%).
29. Stressors of Elderly Parents with Disability
● Siblings
○ Lack of support from others may lead to family tension
○ Financial help from other family members
● Social
○ Lack of social outings, which can lead to isolation
○ Inability to safely go to same places prior to diagnosis
● Caring for Parent with Disability
○ “What do I do?”
■ Lack of preparedness/expertise for best treatments
■ Fear of making family member’s condition worse
■ “What if….”
30. QUESTION 2
In 1966 75% of Americans surveyed had
trust and confidence in the leaders of the
medical profession. In 2012, how many
shared this outlook?
31. Common Problems Dealing with Health Care
● Information literacy (adults vs older spouse)
○ Patients forget up to 80% of what physicians tell them
○ 50% of what they remember is recalled incorrectly
○ Reading ability
■ The average American reads at an 8th grade level
■ Most health care materials written above 10th grade level
○ Terminology: CVA, CHF, HTN
● Communication
○ Minimal discussion with families about the conditions, treatments, prognosis
○ Poor identification of resources: transportation, assisted living, HHA
32. Common Problems Dealing with Health Care
● Lack of care
○ Patient viewed as a disease, not a person
○ Understaffed leads to rushing and a poor quality of care
○ Kept for longer than needed
○ Untrained or ill-prepared health care providers
● Trust
○ Frequent errors with medication, treatments, and unnecessary surgeries
■ Infections, pressure sores, adverse drug reactions
33. Common Problems Dealing with Health Care
● One in four hospital patients are harmed by preventable medical mistakes
● Once a family member was discharged, only 3 in 10 expressed confidence in their ability
to get correct information about and/or have success in procedures performed at a hospital
● Preventable medical errors claim the lives of 200,000 people each year
https://www.youtube.com/watch?v=PsIYW3Npajs
35. Caring for the Caregiver
We are heading into a kind of caregiver crisis. The number of people 65 years and older is
expected to rise 101% between 2000 and 2030, yet the number of family members who can
provide care for these older adults is only expected to rise 25%. This raises a series of related
questions, not least who is going to step up to fill the gaps?
Identify stressors, resources, healthy coping
Respite Care
Counseling and support groups
Humor
37. Let’s figure out how to help people become
“AWESOME”?
Group 1:
Come up with a list of coping strategies that
we learned from the previous presentation?
Group 2:
What type of characteristics would you look
for in a temporary caregiver?
Group 3:
What type of things would you look for
in a support group?
Group 4:
What could you tell a caregiver who felt
guilty about enjoying appropriate humor?
(i.e. laughing at TV show, movie)
38. Coping Strategies
“The cognitive and behavioral attempts to manage specific demands that are
appraised as stressful.”
Denial, avoidance, and suppressing feelings
May be successful in the short term
Caregiver does not develop sense of control
Highly involved in caregiver anxiety
Less involved in depression
39. Problem vs Emotional Based Coping Strategies
We have learned many coping strategies in past
weeks. In general….
Emotion-focused - internal strategies used to
manage one’s emotions.
Greater levels of DISTRESS
Problem-focused - efforts to change a stressful
situation in some way.
Greater caregiver well-being
40. Respite Care
Temporary relief from caregiving duties
A number of programs including:
In-home respite care by trained caregiver
Adult day care
Short-term institutionalization of care recipient
Underused programs
Positive impact on caregiver’s psychological health
43. Support Groups
Peer or professionally led
In person or online
Discuss concerns with others in similar situations
Educational components
Information sharing
Create network for caregiver
44. Counseling and Skills Training
Individual vs group counseling
What are the positives of each?
Skills training to teach caregivers specific techniques to decrease burden
Examples?
Carer Education Programme - counseling, education and skills training
45. Humor
Balance for caregivers
Less overwhelmed
Decrease burden
Humourous books and movies
Guilt felt by caregivers
How does humor actually help?
Should we always encourage humor and
46. Humor
Positive effects of incorporating appropriate
humor
More effective communication
Increased personal satisfaction
Increased goal accomplishment
Professional judgment needed
Is this an attempt at balance or a cry for
help?
48. Impact of Long Term Care on Caregivers
Negative:
Higher prevalence of depressive symptoms, clinical depression and anxiety
Knowledge: biomedical vs caregiving
Increased psychotropic drug use
Self-reported worse health
Health care use*
Chronic illness*
Cardiovascular functioning*
Strain on marriages
Fighting with siblings
Children feeling neglected
49. Impact of Long Term Care on Caregivers
Positive:
Enjoyment of role
Positive affect/satisfaction
Role gain
Growth and meaning
Interventions:
Designed to enhance a variety of positive outcomes
Mastery/competence
Self-esteem
Self-efficacy
Health behaviors (e.g., exercise, weight management).
50. Advocacy of Physical Therapist
The Role of PT
Advocate for caregiver
Open communication
Identify Resources
Home care
Support groups
Discharge Education
51. QUESTION 4
What percent of patients have the
“basic prose or below literacy skills”
when it comes to reading medical
literature?
52. Reflection Questions
1. Assume that one of your parents become seriously ill or disabled today
a. In your family, who would accept the primary caregiving role?
b. What burdens would be imposed on this person?
c. What kind of support would be available?
d. What kind of health care provider behaviors would be the most helpful?
1. Imagine you are 5 years old and your younger brother has just been born with a disability
a. What effects might this have on your family?
53. Case Study
Rachel is a 3rd year PT student, living on the East Coast with her grandparents while
attending school. Her parents and brother live on the West Coast, with her mother being
the only child of her grandparents. Rachel’s grandmother was recently hospitalized
following a CVA and is receiving home care services. Because Rachel is the only one in
the family to attend college, in a healthcare major, and living with her grandparents, the
family expects her to be the advocate. She is receiving PT 3x/week but the grandfather
feels the therapist is pushing his wife too hard. A HHA also comes into the home daily to
help the grandfather with ADL’s, but he feels it is an invasion of privacy.
1. How are the family dynamics affected by the circumstances?
2. How are the roles and responsibilities of each family member altered?
JACI
What we need: cards with 24 celeb names (Jason), candy (nate), groups 1-4 written on board (kayla)
Room set up: sit with your group (4 groups; groups of 3 or 4)
Use groups for pre-quiz and case studies
Celebrities with disabilities or with family members who have disabilities
Group 1 (Kayla): John Travolta ; son with autism(not talked about after his death) and history of seizures
Group 2 (Jason): Stephen Hawking ; ALS, wife was caregiver, also had children
Group 3 (Nate): David Beckham: son has epilepsy - paparazzi
Group 4 (Jaci): Franklin Delano Roosevelt: polio, wife took over many presidential responsibilities without public knowledge
JACI
7 minutes
Hawking: Hawking later said that the engagement gave him "something to live for"
His disabilities meant that the responsibilities of home and family rested firmly on his wife's increasingly overwhelmed shoulders
Hawking's marriage had been strained for many years. Jane felt overwhelmed by the intrusion into their family life of the required nurses and assistants
3 children (‘67, ‘70, ‘79)
KAYLA
Severe Seizures - on many diff seizure medications his whole life, unfortunately had one in the bath-tub and passed away in 2009
JASON
At the time, doctors gave him a life expectancy of two years
Had 3 children (‘67, ‘70, ‘79)
kayla
KAYLA
Trivia: candy for the closest
Each group will collaborate for guess - closest group gets candy (price is right style)---have groups write answer down on index card (Jason)
For each question winning group can come up and get candy (more or less just to get them up)
5 minutes
257 Billion
25%
44.4 Million
>85
85%
At age of 44 after retiring, mother goes back to work for the IRS 10 hrs 4 days a week after years of being a stay at home mother
Sister moves after getting married to upstate, Boyfriend and brother must be around to help do anything around house
Thoughts or similar experience?
KAYLA
Each group will bring their guess up maybe? Get people moving and out of the seats
37% (Let’s have each group write down a percentage on a white piece of paper, the closest to the actual percentage gets candy… The Multiple Answer statistic questions doesn’t incorporate collaboration… Personally, when I hosted trivia and we did a “price is right” type question to see what team received the free beer ticket people were more engaged & invested in the question
Before fade in, anyone have any ideas/examples?
REMIND: Unpaid caregiving for family members is estmiated at about $257 billion annually in the US
Work - positively benefits child and parent, but parents state it negatively affects finances reporting leading to stress, anxiety, and depression - caregiving seen as women’s work in many cultures and it will be up to the husband or the man in the house to be the sole breadwinner
Caregivers are important! - they should be viewed by us as partners in the health care system as they learn how to assist their loved ones and require less dependence on outside help saving money
Sean Penn plays a man w/ severe developmental disability (mentally challenged) with a mental capacity of a 7 year old, trying to keep custody of 7 year old daughter as she surpasses her father and tries to hold herself back in school
0:36 - 1:30
Who is disabled - Spouse, mom/dad, child
Caregiver roles will change - caring for a spouse may bring partners closer together or it may change martial roles and responsbilites for the house or children and can decrease a caregiver’s satisfaction in life (touch more on in a bit)
Caring for a parent by children may decrease their time with their own children (sandwhich generation) and using their finances to pay, negatively affecting their relationships
Emotions creating emotional strain for different family members - uncertainty For the future, needs of other family members giving enough assistance? and so on
Isolation from being a caregiver or from having the disability! (all the emotions I spoke about come into play and people feel they do not have time, money, or desire to go)
Some individuals responsibilities change, they may not have the ability to afford hosting holidays or if Dad cut the turkey every year at thanksgiving unfortunately someone else must do it
Reportings → Those w/ disabilities are 2x likely to live alone, if they have a disability will marry later in life if at all, disabled women marry and form families significantly less often than non-disabled women or even disabled men
Ways that people can still be social! Encourage our patients to see what is out there and also provide information!
Nate
Each group is assigned a scenario
Give 1 minute for them to come up with ideas
Ask scenario 1 what they think & then play the video clip coordinated with it and how a real family dealt with the scenario… then scenario 2 → 3 → 4
NATE
http://www.tubechop.com/watch/7197379 (2:10)
Kyle Maynard
Amniotic band syndrome - blood clots in utero & fibrous bands constrict the growth of fetal limbs
In a normal pregnancy it is 1 in 10 million chance
Accomplishments
Championship Wrestler
Won 36 varsity wrestling matches during his senior year
Football Player
First tackle when he was 11… It was this moment that he realized that all these obstacles started to dissolve
Weightlighter
MMA Fighter
Full 3-round MMA fight
Mountain Climber
Nearly 20,000 ft Mount kilimanjaro
“Used to cry myself to sleep some nights b/c I would just wish that I would wake up and have arms and legs. No matter how hard I would focus on that forever, it would never have happened. So when we go and focus on those thigns that we have no control over, it brings us nothing but unhappiness.” - The School Of Greatness by Lewis Howes
http://www.tubechop.com/watch/7197999 (0:49)
Son, hunter, had Krabbe-Leukodystrophy
Affects the white matter in your brain that controls all your motor skills
Avg life span = 14 months, Hunter lived to be 8 ½ years old
NATE
http://www.tubechop.com/watch/7197778 (0:33)
Pros outweighed the cons, the only thing stopping them was that his foot would be on backwards
If we would’ve opted for the one that would’ve look the most normal, he wouldnt have been able to do anything but walk.
“He looked us both straight in the eye and said, “I want that.”
He says his first year back at school, “everybody was weird” about his backward leg, but by now, they’re used to it. Besides. when hes wearing pants - despite a slight limp & some lingering troubles with running - he looks just like any other kid. Dugan leaves us with this advice, which he learned the hard way: “Never give up, because 90% of it is in your mind.”
NATE
http://www.today.com/id/43053031/ns/today-today_health/t/meet-boy-backward-leg/#.VkY758vqsVt
http://www.tubechop.com/watch/7199610
http://www.tubechop.com/watch/7199669
Dr. Wiese
Stoic, naval doctor doesn’t show much emotion
Felt helpless because this was his profession and he couldn’t help his own son
Continued working from clinic
Mrs.Wiese
Became primary advocate, spent most of the time at the hospital
Works from home, Hamilton College was flexible with her work schedule
Role reversal, despite Dr.Wiese having the medical knowledge, since he wasn’t around all the time… Mrs. Wiese became the primary advocate for Pat
She knew medication schedule, how he was reacting to chemo, when he had PT, etc.
She was optimistic, thought he could potentially play again…
NATE
8 minutes
Caregiver
Parents becomes advocates, negotiate educational, social, and health care systems to obtain services
Conflict can occur between on what is best for the child
Stress before, during, and after the procedures have been completed
Lack of control increases stress
Solution: keep the parents involved - have the parent describe the procedures to children, instruct them in deep-breathing and relaxation exercises, or even hold hand
Experience emotional loss and feel responsible
Mourn the loss of the child they expected
Depression, anger, guilt, lack of control, powerlessness, despair, envy parents with more typical children
Educate families on what to expect may alleviate some of the anger and depression
Feel guilty about going out and having fun when their child cannot, leads to isolation of family, which can cause depression
Anxiety
Increased due to financial loss from expenses of care, equipment, and time away from work
Decreased career mobility
Remain in positions or areas to retain health care coverage
NATE
Siblings
Experience guilt because they are healthy
Already developed a bond, fear of death and siblings will no longer be available to them
Yearn for life as it once was
Early bonding b/w siblings and feelings of warmth and compassion may promote more positive outcomes
Desire to understand more about the illness and the disability they are experiences
Children need to be reminded that they need to be treated as children not adult caregivers
NATE
Anyone with similar experiences?
Other options for mom?
May bring spouses closer together
Altered relationship
Bills, household responsibilities - caregiver may feel overwhelmed if responsibility changes hands
Someone who does not have insight into their disability - may feel spouse is “taking over”
Well spouse feels that they have lost their spouse even if they are still living - different kind of grief “though you’re still with me, I’ve been alone all along”
Older spouses - greater burden than adult children caring for similar person
Aging, physical decline
No other roles outside of home
JASON
-Anyone experience similar or how has tx been similar or different with pt who have encountered?
-With the Hope act: MD have resources and get paid for the extra time they have to spend with patient to tell them about the disease and where they can go for help.
-Alzheimers Assoc is a huge resource that has a 24/7 an actual person, the offices have care consultants, support groups and resources available. People have heard about this disease, but until it hits them personally, you don't know much about it.
JASON
Ask class before presenting
JASON
64 minutes
-These last long after death
JASON
http://www.medpagetoday.com/PublicHealthPolicy/GeneralProfessionalIssues/48402
34%
JASON
JASON
Ask class before presenting
http://articles.mercola.com/sites/articles/archive/2014/03/15/bad-american-health-care-system.aspx:
Types of errors include inappropriate medical treatments, hospital-acquired infections, unnecessary surgeries, adverse drug reactions!.
-Underutilization of resources
JASON
http://articles.mercola.com/sites/articles/archive/2014/03/15/bad-american-health-care-system.aspx: about 1,000 people die EVERY DAY from hospital mistakes alone. Types of errors include inappropriate medical treatments, hospital-acquired infections, unnecessary surgeries, adverse drug reactions! One in four hospital patients are harmed by preventable medical mistakes. In this country 250,000 die as a result of medication errors.
-Underutilization of resources
JACI
http://www.tubechop.com/watch/7237910
Everyone has down moments & there may not always be resources available to help.
Being a family member, and especially a caregiver, of someone with a disability is the road less travelled & there is times it just wears you down
Kid President has osteogenesis imperfecta → born with a disease where he has brittle bones & he is always fracturing them. However, he has such a positive outlook that he doesn’t even worrying about breaking his bones each day, he just lives his life
Sometimes you need to find a way to recharge your batteries
A couple ways to do that is find your own coping strategies, find a support group so you don’t feel alone, find a temporary caregiver so you can have a break, or even go to personal therapy
JACI
http://linksource.ebsco.com.proxy.library.stonybrook.edu/FullText.aspx?linkout=http%3a%2f%2fproxy.library.stonybrook.edu%2flogin%3furl%3dhttp%3a%2f%2fdx.doi.org%2f10.1017%2fS1041610206004297
Coping: “The cognitive and behavioral attempts to manage specific demands that are appraised as stressful.”
Strategies involving denial, avoidance, and suppressing feelings may be successful in the short term but caregiver does not develop sense of control that is beneficial to emotional health in the long term
Coping strategies have been seen to be highly involved with anxiety, less involved in depression
Temporary relief from caregiving duties
A number of programs including:
In-home respite care by trained caregiver
Adult day care
Short-term institutionalization of care recipient
Very frequently underused programs, with many studies showing positive impact on caregiver’s psychological health
Caregiver reluctance, lack of awareness of programs or unavailability of programs are all possible barriers to use of respite care
Individual vs group counseling
Individual - more effective in promoting psychological well-being
Group - more effective in creating feeling of social support
Skills training to teach caregivers specific techniques to decrease burden
Examples - effective communication, ADL training, techniques for cognitive stimulation
Carer Education Programme - counseling, education and skills training
The CEP consisted of eight 2-hour sessions covering general information on dementia and available services, management of everyday problems, reality orientation for care recipients, communication techniques, coping with loss, stress management, hospitalization, and legal issues. The results of an evaluation of the program indicated that CEP participants increased knowledge about dementia at postprogram follow-up
Help achieve balance in the caregiver’s life
May help caregivers feel less overwhelmed and decrease caregiver burden
Humourous books and movies
Guilt felt by caregivers
Effects of incorporating appropriate humor - more effective communication, increased personal satisfaction, and increased goal accomplishment
Professional judgment needed - cry for help?
https://caregiver.org/selected-caregiver-statistics
C = 40-70
quarter to half of these caregivers meeting the diagnostic criteria for major depression.
JACI
If the group guesses somewhere b/w 40 & 70… they will get candy
10-40%
25-55%
40-70%
55-95%
http://jgp.sagepub.com.proxy.library.stonybrook.edu/content/14/4/179.full.pdf+html
* still determining if these are significant, different studies different methods, inconsistent conclusions
biomedical knowledge associated with more anxiety (dementia)
Caregiving knowledge associated with less anxiety
If we begin to take a more holistic view of caregiving we can try to exploit the positive effects and build them up, rather than only trying to decrease the negative effects.
NATE
4 minutes
Professionals do not recognize family members as experts about loved ones
PTs can be an advocate for the caregivers
Professionals distances themselves due to the emotions that families express and may fear litigation
PTs can open communication - PT sessions are typically a half hour so we have the opportunity to “listen”
Caregiver advocacy with patients that have physical, cognitive,emotional deficits that make the patient unable to make their own decisions
Discharges
Moving from one setting to another( ICU → step-down unit → SNF, etc.), family caregivers need to be advocates for their loved ones so we need to educate the caregivers
Educate on progress, discharge possibilities, what to look for to monitor the patient
Monitor clients, observe subtle changes, interpret verbal/nonverbal cues, analyze info, make decisions about actions, keep track of what to do and when to do it, provide direct care, make adjustments as needed, manage treatment schedules,administer medications, seek outside help, negotiate health care system
Identification of Resources
Homecare - require professional advice & coordination
Identify needs and collaboration with client, family, and community services to acquire resources
*Slide About Community Resources Available
Support groups
Discuss problems, successes, feelings regarding their roles
29%
Supports the claim that nearly 1/3rd of the population cannot read the necessary information to make an informed decision.
Family members may not understand what procedure exactly is being done or options are available. Its our job to explain and simplify, take into account all aspects of the situation.
http://www.jointcommission.org/assets/1/18/improving_health_literacy.pdf
JASON
-In groups 10 minutes
-Have people move across room and sit with new people (it gets them up and they can talk to more people)
