The diagnosis of kidney failure – and the need to start long-term dialysis – can turn a child’s life inside out. The typical patients spend four hours a day, three days a week on dialysis, significantly interrupting school days and making it nearly impossible to lead a typical childhood. This can lead to depression, anxiety and suicidal ideation.
Children’s Health℠ is home to one of the world's largest pediatric hemodialysis centers, and we've developed a comprehensive approach to identifying these psychosocial impacts and helping children cope.
The emotional toll
“When children get a diagnosis of kidney failure, they and their families are often scared,” says Elizabeth Brown, M.D., Pediatric Nephrologist at Children’s Health and Assistant Professor at UT Southwestern. “There’s a lot of fear attached to the word ‘dialysis,’ and they worry about how this is going to impact their child’s future and how they’re going manage the dialysis schedule and routine.”
It’s an understandable reaction: The years ahead will be filled with hardship and disruption. Lengthy dialysis sessions cause children to miss large amounts of school, and many will struggle to keep up with homework. Making matters worse, it can be impossible for them to participate in typical childhood activities or have normal social lives. And children with kidney failure must adhere to strict diets that help regulate salt, phosphorus and potassium.
“Kids can be incredibly resilient, but we unfortunately see a lot of depression and anxiety, and it can progress to suicidal ideation,” says Destiny Boos, LMSW, who specializes in helping children with renal disease. “They just don't want to be on dialysis anymore and they don’t see any way out.”
Evaluating and monitoring psychosocial health
Children's Health cares for more than 60 patients with end-stage renal disease a year. Our hemodialysis unit has 21 dialysis stations – the most of any pediatric hospital in the U.S, and we use a team approach to monitoring and addressing psychosocial health. Destiny is one of two social workers on a team that also includes a child life specialist and a dietitian.
Their evaluation of psychosocial health starts with completing a comprehensive plan of care within the first 30 days of diagnosis and dialysis.
“This includes psychosocial screening and it helps us get a sense of how they’re coping and what challenges they might face,” Destiny says.
The plan of care is revisited again after 90 days, and then annually. We also give periodic quality-of-life surveys to patients and caregivers, and then discuss the results with them.
Our team is especially vigilant about depression, and we use the PHQ-2 tool to periodically screen patients. If that screen is positive, we follow up with a PHQ-9. Additionally, children assessed as unstable (either physically or psychosocially) are given a CMPA every month until they’re out of the danger zone.
Connecting families with support
Destiny and her colleagues recommend outpatient mental health counseling for almost every patient.
“It can make a big difference, but it can be hard for families to find time for another appointment, and many families end up not having the time or resources to find room for counseling,” Destiny says. “A lot of times, we’ll take the extra step of finding a counselor who accepts their insurance and is located close to their home.”
If patients can't manage to see a therapist on their own and are listed status 1 for transplant, we will connect them with the transplant team psychologist or a clinical therapist at Children's Health.
"They can coordinate a time to see the patient after dialysis, and that makes it convenient and helps them stay as healthy as possible," Destiny says.
Helping children cope
Still, many children struggle, and Destiny and her colleagues are constantly watching for patients who might be falling into depression or losing motivation. In addition to the regular screening and evaluation, they spend the first week of every month doing rounds in the hemodialysis unit, where they meet with every patient and family. This, combined with the fact that Destiny and her colleagues often have informal visits with these patients during dialysis, positions our team to identify when a patient and/or their family is struggling.
“We have long-term relationships with these patients and we’re talking to them all the time, so we can pick up on whether there are new stressors in their lives or in their family,” Destiny says.
When patients struggle, Destiny often counsels them to focus on what they can control, and reminds them that they can still achieve key milestones like going to college.
“It helps to empower them in their care, and to remind them they can still have productive, fulfilling lives,” she says.
To keep patients engaged and motivated, our team introduces goals that help move them toward becoming transplant candidates.
“We might start by identifying a goal like taking their phosphorus binders five days a week,” Destiny says. “If that works, we’ll increase it to seven days, and keep layering on more goals from there.”
If the goals don’t work, Destiny talks to the family to identify what’s getting in the way, and then adapts with a new plan.
“A lot of times, we just have to continue explaining to families what is required for transplant, and how they’ll be affected if they don’t follow their diet or take their medication,” Destiny says.
Finding inner strength
It’s all part of finding ways to build resilience in children who will spend much of their life on dialysis and struggling with severe health issues.
“One of our challenges is that families think a transplant is going to get them back to normal, and we have to teach them that they’re still going to need lots of medications, that some patients feel worse after a transplant, and that a new kidney might only last 10 to 12 years,” Destiny says. “So the more they can learn about maintaining their mental health, the better off they’ll be in the long run.”
For Destiny, success comes when she sees kids finding normalcy and happiness in the midst of their condition.
“You see them hooked up on dialysis but still playing Candyland, or talking about applying to college,” she says. “It’s incredibly inspiring and it keeps us motivated to give them the best possible care.”