Understanding Caregiver Preferences for Treating Children with Intellectual and Cognitive Disabilities and a Mental Illness

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What was the research about?

Children with intellectual and cognitive disabilities often have problems with reasoning, learning, and problem solving. With such challenges, caregivers may have to make choices for their children about their health care and treatments. These children may need such help into young adulthood.

In this study, the research team wanted to find out what matters most to caregivers about their children’s care. Caregivers had children with an intellectual or cognitive disability plus a mental health condition, such as depression or anxiety. The team interviewed caregivers about their preferences. Then the team used this information to design a survey. A larger group of caregivers filled out the survey.

What were the results?

In the interviews, the research team found that four results mattered most to caregivers when making care decisions. These included their children’s ability to

• Function in school
• Form relationships with others
• Live on their own as an adult
• Not cause trouble in the home or hurt others

Caregivers who took the survey ranked two treatment results as most important. These were that their children

• Not hurt themselves or others
• Live on their own as an adult

Also, caregivers who took the survey preferred

• Having their children in a special program for children with disabilities in a public school or alternative school, rather than a regular classroom in a public school
• Caring for their children at home instead of someone else caring for their children
• Choosing a medicine that would not change their children’s personality much

Who was in the study?

The study included caregivers of children with an intellectual or cognitive disability. The children also had a mental health condition. Children were age 26 or younger. Caregivers spoke English or Spanish.

To create the survey, the research team interviewed 58 caregivers.

Then the team gave the survey to 413 caregivers. In this group, 71 percent were a child’s mother, 22 percent were a child’s father, and 6 percent were another relation. In addition, 56 percent were white, 24 percent were Hispanic, 13 percent were black, 4 percent were Asian, and 3 percent were another race. Also, 32 percent made more than $75,000 per year, 75 percent had at least a college degree, and 80 percent were married.

What did the research team do?

First, the research team interviewed 58 caregivers. The team used what they learned from these interviews to create an online survey. The team then sent the survey by e-mail to another 413 caregivers.

Eight staff from advocacy groups and support groups helped the research team. Four caregivers of children with an intellectual or cognitive disability and a mental health condition were research team members. They helped design the survey, collect the data, and present the findings.

What were the limits of the study?

In this study, most caregivers were mothers. Most had gone to college and were married. They also had higher incomes. Results might be different if the study had more caregivers with less education, who were single, who were fathers, or who had lower incomes. The study results may not be the same for children with only an intellectual or cognitive disability, or only a mental health condition.

Future studies could see whether using care preferences improves a child’s health. Future research could also study caregivers with different traits, such as being single or having lower levels of education and income.

How can people use the results?

Knowing about these preferences can help caregivers and doctors discuss and plan a child’s care.

Objective

To identify care management priorities and preferences for medication treatment outcomes of caregivers of children who have intellectual and cognitive disabilities plus a mental illness

Study Design

The research team used a mixed-methods approach to identify patient-centered outcomes of greatest importance to caregivers when making decisions about medication treatment and care management for their children with intellectual and cognitive disabilities and a mental illness.

In the first part of the study, the research team held interviews and focus groups with 58 caregivers of children age 26 or younger to identify meaningful treatment outcomes.

The research team used the results of the interviews and focus groups to develop a survey. The team designed the survey as a discrete choice experiment and a conjoint analysis. Caregivers selected a preferred care management profile from three shown. The 18 questions displayed different profile options by varying the combination of management options. The team used a best-worst scaling experiment to elicit from caregivers the most important outcomes from their child’s medication treatment.

The research team gave the online survey to 413 caregivers. Of these, 71% were a child’s mother, 22% were a child’s father, and 6% were another relation. In addition, 56% were white, 24% were Hispanic, 13% were black, 4% were Asian, and 3% were another race. Also, 32% made more than $75,000 per year, 75% had at least a college degree, and 80% were married.

Eight staff members from advocacy groups and support groups helped the research team with outreach and participant recruitment. Four caregivers of children with intellectual or cognitive disabilities and a mental health condition helped with research activities, such as data collection. Two state administrators provided advice during the study.

Results

From the focus group and interview data, the research team found that four domains of outcomes were important to caregivers when making treatment decisions. These domains were school functioning, social relations, future independence, and behavioral functioning.

Caregivers who responded to the survey prioritized some treatment outcomes as more important than others. The most important outcomes were that children did not hurt themselves, other children, or siblings at home, and could live on their own as adults and manage their own healthcare decisions in the future. The outcomes that caregivers noted as least important were that children get good grades in school and have a paying job as an adult, and that caregivers have friends who understand their child’s conditions.

The survey revealed three preferences for care management that were most important to caregivers:

• Placing children in a special program at a regular public school or an alternative school, rather than in a regular classroom in a public school
• Caring for children at home rather than having an institution care for children
• Having a medication that would have minimal impact on changing the child’s personality

Limitations

Caregivers were mostly mothers. Caregiver views may have been different overall if the study had included more fathers or other caregivers. Most participants were college educated, married, and had high incomes. The results may have differed if the study had included more caregivers who had less education, were single, or had low incomes. Results may not be the same for children with only a cognitive or intellectual disability, or only a mental health condition.

Conclusions and Relevance

The research team was able to identify caregiver preferences for treatment outcomes and care management for their children.

Future Research Needs

Future research could examine whether identifying and prioritizing caregiver preferences helps improve patient outcomes. Additionally, researchers could repeat this study with caregivers who are single or have lower levels of education and income.