Results Summary

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.

Final Research Report

View this project's final research report.

Peer-Review Summary

Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also assesses how the project addressed PCORI’s Methodology Standards. During peer review, experts read a draft report of the research and provide comments about the report. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. These reviewers cannot have conflicts of interest with the study.

The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve descriptions of the conduct of the study or to clarify the connection between results and conclusions. Sometimes, awardees revise their draft reports twice or more to address all of the reviewers’ comments. 

Peer review identified the following strengths and limitations in the report:

  • The reviewers thought that the report was very strong, but they added that the researchers needed to improve how they connected the study objectives and the presentation of results. The researchers revised the report accordingly and added a discussion of the relevance of the study in light of current health policy and healthcare service practices related to shared decision making.
  • The reviewers asked the researchers to consider reporting information about the group of survey respondents who did not finish the survey or who had invalid surveys. Reviewers asked for this information to address their concerns about possible systematic differences between those who provided valid surveys and those who did not. The researchers pointed out that they did not consider the demographic data from invalid surveys to be reliable. Therefore, they felt that comparing participants with valid and invalid responses would lead to misinformation about selection bias.

Conflict of Interest Disclosures

Project Information

Susan dosReis, BSPharm, PhD
University of Maryland, Baltimore
$1,009,833
10.25302/10.2019.ME.130601511
Methods for Prioritizing Surrogate Desired Health Outcomes for Patients

Key Dates

December 2013
September 2018
2013
2018

Study Registration Information

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Last updated: April 12, 2024