February 2019, Volume XXXII, No 11
Helping medically complex pediatric patients
ix-year-old Hannah has required around-the-clock care for spina bifida and other complex medical conditions her entire life. A trach tube, feeding tube, and wheelchair are indicators of her numerous days and nights spent in a hospital or clinic awaiting another test or surgery—experiences that have impacted how she manages her emotions and interprets the world around her today.
While Hannah’s entire childhood has been surrounded by medical professionals dedicated to improving her physical health, there wasn’t a care plan in place to focus on her mental health and how she can learn to effectively communicate feelings or cope with challenges.
In addition to Hannah living through her own traumatic experiences, her parents have felt the emotional, physical, and financial impact of being primary caregivers, coordinators, appointment schedulers, and more. Her 8-year-old sister Sophie has also been affected by the care Hannah requires as she internalizes feelings about the attention, time, and difficult procedures she’s seen her sister endure.
At Pediatric Home Service (PHS), we often see medically complex patients and the caregivers who support them focusing the majority of their attention on physical health care needs while overlooking emotional health—understandable, given the physical hurdles and challenges these individuals consistently face. But when mental health counseling is included in the conversation, another piece of the puzzle helps us to assemble a more holistic care plan—one that could also provide tips for physicians and other health care providers.
With many methods of counseling available, the age and cognitive level of a client can be an effective indicator of which approach will work best. Three types in particular—play therapy, individual therapy, and sibling support programs—have been efficient in meeting the needs of clients as young as age 2 through adulthood. They may have a diverse range of interactions with physicians and health care interventions, depending on their medical history or personal experience.
Clients who benefit from receiving therapy may be personally or closely connected to someone facing a chronic or life-threatening disease like cancer or muscular dystrophy. Multiple factors can impact their mental health: dealing with the long-term effects of repeated surgeries, therapies, and procedures; processing an unexpected life event like a divorce or death of a family member; or any number of other experiences.
By helping individuals, regardless of age, address their fears surrounding medical procedures or confusion about a personal experience, they can begin to build tools that will enable them to more effectively understand and express their feelings in the future.
Parents carry their own risk of secondary trauma.
Support for siblings
It would be an oversight to focus on medically complex patients and parents and ignore the siblings who also observe medical care and deal with its impact on family dynamics. Hannah’s sister Sophie, along with countless siblings in this community, carry their own concerns and often feel isolated from their peers who don’t have a medically complex sibling in the home, or a sibling undergoing treatment for chronic illness or repeated medical procedures.
In a PHS support program created specifically for siblings, children ages 6 to 11 meet in a group setting where they have a space to process thoughts, work through feelings, and express themselves amongst other individuals who have encountered similar experiences. While the conversation may not always be around their brother’s or sister’s medical needs, just having the knowledge that they’re in a safe environment of peers brings a sense of comfort and belonging as they interact and find a community.
“Our older daughter requires a lot of our attention because of her medical treatments and appointments,” said one mom whose daughter participated in a sibling support program. “Our younger daughter notices it and we talk to her, but recognizing she is not the only one who has a sister with some medical issues was very eye-opening for her. Now, she is a lot more comfortable talking about feelings, and knows there are other kids out there dealing with these same feelings she has.”
Medical care generates a great deal of emotion for everyone.
Monica Oberg, MSW, LICSW, is a clinical social worker at Pediatric Home Service, where she provides individual therapy, play therapy, and sibling support programming for children, adolescents, and adults. She received her Bachelors of Science degree in social work from Bemidji State University and her Master’s degree in social work from Augsburg College.