chronic illness and the family susie gerik, md mary short, phd children’s center for restorative...
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Chronic Illness and the Family
Susie Gerik, MD
Mary Short, PhDChildren’s Center for Restorative Care
UTMB Children’s Hospital
March 27, 1995 To Whom It May Concern: My son, Brandon, is my only son. I am reaching out for any help. I have heard a lot about your hospital. I feel if you read all of his reports, you will admit my son, and you will help. I would like also to get Dr. Cook, a Neurologist, to assist in this situation. My son went to Galveston at the age of 4. He was found to be moderately mentally retarded. He did not talk. He did not crawl. But, everything else was done on time. At the age of six, he could talk. And, as time went on, he hardly ever shut up. And we were happy. My son was not smart in books. He had and still has a fantastic memory. He is very smart in his own way. He used to could do things on the Apple Computers, drove a truck on the back roads, roller skated, played Nintendo and Atari… He could do just about anything. At 12, he started stumbling. By the age of 15, his voice or rather his speech and his walk went. Now that really hurt. I love talking with my son. He could always tell me he loves me. And, he goes everywhere with us. Even our anniversaries and vacations are planned for him. But, it is getting so hard now. They have no diagnosis. Only that Brandon has a neurodegenerative disorder. Now at 18, he is having uncontrollable seizures. And instead of seizures in one spot, he is having them all over. He has a tube in his belly. He sweats and runs fever a lot. He can’t even shake his head to tell me he loves me. He can’t kiss me or hold me tight. And also, he looks at me for help. I can’t help him. … Please help me to help my son. He is all I have. He is our little precious. Thanks,Linda Mayeaux
Present Condition Unable to walk Severe spasticity with frequent painful
dystonic posturing Gastrostomy feedings Attends undergarments Periodically requires bladder catheterization Requires fleets enemas every 3 days Only utterances are moans during posturing
Family Situation Parents married for 24 years Very loving and attentive Sleep in Brandon’s room every night Parents never date Large extended family participates Home health visits daily Conflict in the family regarding seeking
treatments
Medical Evaluations 14 medical evaluations In Texas, Louisiana, and Michigan Multiple diagnostic procedures
Medication Regimen 0730 Artane, Depakene, Tetrabenzene 0900 Zantac 1230 Artane, Depakene, Tetrabenzene 1730 Zantac, Depakene, Tetrabenzine 2100 Klonipin, Artane, Melatonin, Chloral
hydrate 2200 Depakene, Bactrim
Medical Costs Clinic visit $567 Hospital admission $45,323 Blood tests $30-321 Large Attends brief $16.71 Kinair bed $128/day Ensure 8 oz $4 MRI $1080
Questions to Ponder How do you think Brandon feels about
his situation? What do you think his wishes are?
Questions to Ponder How much do his mother’s feeling
about him “count” in the process of medical decision making?
What if Brandon’s parents were not available to care for him?
Questions to Ponder What can we do as health care
providers to make the situation “easier” for Brandon? for his parents?
What is our job as healers?
Increasing Prevalence and Incidence
Increase in total population Decrease in mortality Shortened hospitalizations and more
home care
How Many Children? 31% of children have one or more
chronic physical condition at some time during their youth
20% of children have developmental delays, behavioral and emotional problems, and/or learning disabilities
6% of children have a severe chronic illness
Episodes are complex and complicated, but majority of families cope with the situation at least in a satisfactory manner.
During protracted illness, most families have periods of instability
In long, protracted illnesses, even best-adjusted families can become overwhelmed and need help.
Family system is a sensitive structure. A change in one member affects all of the other members as well as the family as a unit.
There are many “right” ways of doing things.
The caregiving responsibility within the family is often delegated mainly to one person. That person must receive adequate emotional and practical support or he/she will likely become a “hidden patient.”
The Chronic Illness Model
Patient
Illness
Environment
Environment
Family Caregiving System
Medical Care System Environment
Environment
Resultant Adjustment
The Chronic Illness CycleSymptomatic: Pre-diagnosis
Diagnosis
Initial Treatment
Post-treatment Adjustment
Chronic Maintenance
Acute Exacerbations
Repeat Crisis or Emergency
Slow Deterioration
Pre-terminal Recognition
Terminal/Death
Mourning – Adjustment to Loss
Family Tasks Understanding disease Help with medical, nursing, nutritional needs
of the patient Help work with the patient’s physical needs Support the patient and family emotionally Utilize community resources appropriately Keeping communication open with medical
team
Crisis Phase Tasks Support the patient emotionally Adapt to hospital environment Develop good communication Maintain home and family Work through feelings of guilt and
blame
Chronic Phase Tasks Develop a routine for the patient Support the main caregiver emotionally Maintain as much independence as possible Learn to prevent complications Cope with “mood swings” Maintain good communication with medical
team Adjust to having “outsiders” come into the
house Maintain family rituals, traditions
Pre-terminal Phase Tasks Discuss final arrangements Prepare emotionally for the death Discuss details around death Maintain relationship with medical
team
Medical Team Tasks Keep family updated Refer to appropriate specialist and
community resources Ensure timely availability
Medical Team Tasks Include patient in discussions if
possible Encourage independence Encourage participation Ensure safety and suitability of home
Medical Team Tasks Ensure the main caregiver is included
as integral member of the team Encourage main caregiver;
acknowledge his/her efforts Discuss main caregiver’s relationship
with the patient Watch for signs of excessive stress Encourage respite intervals
Medical Team Tasks Hold periodic family conferences Encourage family support Encourage voicing of opinions Encourage continuation of family life Encourage use of respite care and
community services
Members of the Interdisciplinary Team
Physicians Nurse Practitioners Nurses Dietitians Physical therapists Occupational
therapists
Speech therapists Psychologists Social Workers School teachers Chaplains Secretaries
Individuals with Disabilities Education Act (IDEA)
Infants and Toddlers with Disabilities - birth to 3 years
Assistance for Education of All Children with Disabilities - 3 years to school age
Eligibility defined by the state
What do Children and Families Receive through IDEA?
Multidisciplinary evaluation Individualized programs Education for child, services for family Plans written into individualized plans
Parents’ Experience Evolving experience Central theme: Facing adversity
Defining Adversity Characteristics of child’s condition Family view of child’s condition Living with loss Gaining strength Magnitude of impact
Managing Adversity Seeking information Planning/preparing Negotiating Utilizing resources
Facing Adversity Normalization Loss (chronic sorrow)
Psychological Stages Death and Dying - Kubler-Ross Grief Theory - Duncan
Shock and Denial Denial IS productive
Bargaining “If I work hard, my child will get well.”
Anger Variety of forms Variety of targets Does not always go away Quality listening is in order
Depression Feelings of guilt and inadequacy Feelings of hopelessness and
helplessness
Acceptance Maybe really “COPING” Probabilities v. Possibilities
The most essential part of a student's instruction is obtained...not in the lecture-room, but at the bedside. Nothing seen there is lost; the rhythms of disease are learned by frequent repetition; its unforeseen occurrences stamp themselves indelibly in the memory. – Oliver Wendell Holmes, M.D.