January 2010 Edition

Home Care


Commentary

The Importance of Respite
I have a new baby who is typically developing, and recently came across this common bit of advice for coping with a cranky baby:

Build a support network--your pediatrician, your spouse, your mother, other parents--anyone you can turn to when the crying gets too overwhelming.  Sometimes just talking to someone about how stressed you feel can make all the difference.  Other times, you may need to get away from your baby for a short break; find a trusted caretaker who can pitch in when you need to relax.1

This is important advice for anyone, but reading it made me reflect that things are just not that easy when you have a child with exceptional needs or complex medical issues.  You can't just hand over a child with a feeding tube or trach to your sister or your neighbor.  Your mom--and even your spouse--may have no idea how to handle your child with autism and his difficult behaviors.

Focus:  Home Care

Patient Centered Care in Home Health Care Companies
by Abby Brogan and Donna Noble
Like many families new to complex medical needs, we struggled at home for seven months before we finally got the help we needed with our home health care needs.  Our daughter Ellie was born in 2006 with Jejunal Atresia that resulted in short bowel syndrome.  After eight months inpatient, she was sent home on Total Parenteral Nutrition (TPN) and enteral feeds.  This dropped us into the challenging world of home health care companies, weekly deliveries, supply forms and inventories.  Not knowing about options, we chose among the biggest of the companies thinking they likely didn't get that way by being bad.

But then small mistakes happened.  And then bigger things happened. 


Obtaining In-Home Services
Many children with complex needs need in-home services.  These services may include nursing care, personal assistant services, behavioral services, homebound schooling, and therapies such as physical, occupational, speech, or behavioral therapies. 

Having these services provided in the home is essential for many children.  Some children may be too medically fragile or immune compromised to receive therapy at a therapy center or school.  Others may have complex medical technologies or extensive care needs that require the skill of a nurse or home health aide.  Children with autism or behavioral issues may need wrap-around services designed to help them learn and cope with daily life activities in the home.  There is also a movement, which is incorporated into many Early Intervention or 0-3 programs, to provide all services in a child's natural environment, which is typically the home.
(Read More)

Organizing and Preparing to Leave Your Child With a Caregiver
by Dawn Klepinger
Who would ever think leaving your child with a caregiver could sometimes take hours of preparation? 

When I first became pregnant, I knew my organizational skills would come in handy as a mother.   I didn't realize how much more I had to learn until I became the mother of a child with special needs.  Leaving your child with a caregiver when he has neurological issues and developmental delays requires a lot of thought, organization, preparation, and patience.  There are many aspects you need to plan for, whether your caregiver comes to your home or your child goes to the caregiver in a different setting, such as school. 
(Read More)

Specialty Article

Other Specialties
Helping Our Kids Communicate Their Health Care Needs
by Randi Sargent
Helping the most vulnerable children and adult patients communicate during hospitalization or when receiving home care services is becoming a hot topic, which is a very good thing.  Whether children are non-verbal prior to hospitalization or as a result of intubation or medication, hospital stays and procedures can be a scary experience for any child, and especially for a child who may not fully understand or be able to communicate reliably.  Even care provided in the home environment can be frightening and challenging for children who cannot communicate their medical needs.

Thankfully, there are now several low-tech communication solutions that were specifically designed to help patients who are non-verbal or non-English speaking gain some control during their hospitalizations.  These communication aids have been shown to reduce frustration and improve patient outcomes by reducing fear, pain and length of hospital stay.  They can also be used in the home care setting to assist parents, home nurses, or respite care providers communicate with children.

Feature Article

Using Children's Books to Support Siblings
by Erin

Sibling relationships are very powerful tools for encouraging emotional, social and cognitive development. Not only can sibling relationships provide emotional support and assistance with difficult tasks, they can also provide opportunities for learning how to manage both emotions and conflict with others in order to get their needs met.  Sibling relationships in families with children with complex medical needs can provide similar benefits; however, sometimes the stress of the child's condition adds additional emotional challenges. 

Depending on their age and level of understanding, children can also be very confused by their sibling's condition.  They may have both positive and negative feelings about the child's illness status, about the amount of care their sibling requires, and about the perceived special treatment or attention (positive or negative) that sibling receives from other adults (parents, relatives, doctors, nurses, and therapists) and peers.  These feelings can become overwhelming and difficult to manage when sacrifices must be made that affect that sibling's daily life or any perception of their worth in the family. Therefore, it is important for siblings of children with complex medical issues to have a way to safely manage their more intense feelings, including anger, guilt and fear.