Psychologist helps families cope with childhood illnesses

When a child has medical issues complicated by psychological ones, a family may find themselves with limited skills to cope with an escalating situation. A serious affliction like chronic pain, diabetes, asthma, or seizures can be terrifying to both the child and to the adults trying to support him and, for many families, the illness, when accompanied by setbacks in treatment because of emotional problems, can become overwhelming.

Jack Nassau, Ph.D., chief psychologist at the Hasbro Children’s Partial Hospital Program at Rhode Island Hospital, has spent his career in researching and working in pediatric psychology. As part of a multidisciplinary clinical team at the Partial Program, Nassau provides treatment for children in an outpatient program that offers a unique combination of psychological, medical and family therapy aimed at any physical illness.

Nassau spoke with New England Psychologist’s Catherine Robertson Souter about the program and the importance of working with families to better support their ongoing efforts in parenting in a difficult situation.

Q:  Tell us more about the Partial Program.

A:  The program was founded in 1998 and it has grown over the years up to where we can treat 24 children at a time. It is a day treatment program for children and adolescents, age 6-18, with both medical and emotional issues.

We treat kids with a variety of illnesses who have been unsuccessful at managing those in the context of standard care. Our treatment system employs a family-systems based model that attempts to evaluate the belief system that the family has about the child’s illness and the difficulties that they have had managing it.

Then we employ a variety of therapies to influence that belief system so that family relationships and behavioral responses are modified and the illness is brought better under control.

Q:  What types of therapies are used?

A:  The three major components are the day treatment component, the family systems treatment component and the interdisciplinary treatment component. We are staffed by pediatricians and child psychiatrists, child psychologists, pediatric nurses, social workers, milieu therapists, teachers, nutritionists and a whole team of providers working together in an integrated way to address the different factors of a child’s illness and its presentation.

Over the course of the day, children participate in goal setting, skills building, group therapy and activities including art therapy. Each child is assigned an individual therapist who works closely with the family in therapy twice a week as well.

Q:  Have you seen other programs like this one?

A:  There are programs out there that combine different aspects of what we do. For example, there are programs that focus on pain treatment or on eating disorders and maybe with an interdisciplinary or family systems model. But ours is rare in that it combines all three of those components and it is not illness specific.

Q:  There must be greater need than that and a lot of demand if it is not a typical program?

A:  We do have a waiting list and do get requests from out of state.

Q:  You have been involved in research through the hospital and this program. Can you tell us about that?

A:  We had an NIH grant to further develop an illness belief questionnaire. We had always collected clinical data when people were coming to the program and now we are also collecting data at discharge and follow up points to look at changes over time and healthcare utilization following the program.

Q:  What results are you seeing?

A:  In terms of the illness belief piece, we were noticing changes in beliefs that were encouraging to us such as people reporting that they felt more in control. On the healthcare utilization piece, we do not have any hard data at this point. We had started collecting that information within the past year.

Q:  In the research you have done, are you looking at the effect of psychological issues on physical illness or the other way around?

A:  When I was doing stress and immunity research in asthma, there was developing literature around the influence of stress on the immune system so that model was more along the lines of how does stress influence asthma.

Then there is other research that looks at what are the stresses associated with asthma and what are the tasks that have to be done to manage it and how do those influence a child’s development or a family’s.

But clinically, we are really looking at things from a bidirectional perspective: how are the physical illness and psychological well-being interacting to produce this outcome that we are seeing in front of us? Say we have a child with depression and difficulty with diabetes treatment adherence, we will work on treating the depression and on adherence behaviors understanding that success in each area will positively influence the other.

We are also looking to mobilize the family to take a significant role in that process. A family might say the child’s diabetes is so bad we can’t do other things we might usually do as a family. That has other downstream effects on the child and family functioning.

We may encourage that family to not only take charge of the diabetes but also to normalize how they parent their child, so for instance have limits around curfew or other typical things parents need to do. We are looking at it from a bio psycho social model – all the pieces are interacting with one another.

Q:  What do people not realize about the link between mental and physical health in children especially?

A:  I think families come in with all different types of beliefs and usually part of the news is that in most cases there is an opportunity or necessity to balance out the beliefs. Things are not all medical or all psychological. They are a combination of both.

The other part of the news is that all children are hopefully growing up in the context of some kind of family constellation and incorporating the family into treatment is a valuable way of sustaining gains outside of the treatment intervention. When we discharge from our program, we have confidence of them being able to move forward because we had the family integrated into the treatment.

Q:  Why is this work important?
 
A: In the context of the kids we see, we know that we have to support the family in being able to implement this treatment. Every morning they check in with the nurses who get a download of the evening, how it went, any problems, etc.

We do the same thing in the afternoon when they pick the child up. That piece is where I see so much import in working with the family and providing psycho-education and empowering them to take charge of things that have been so challenging. They will be the ones who need to continue that work on a day- to-day basis.

Q:  You are seeing the highest need patients, but wouldn’t this greater understanding of the link between mental and physical health and family support be helpful to everyone out there?

A:  Yes, definitely. Taking a holistic view and trying to integrate how physical and mental health are operating together is important for any child. If you look at the bio psycho social models of chronic illness, that kind of gets at this idea that the expression of chronic illness is a combination of biological psychological and social factors.