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  • Does A Parent Peer Support Program He...

This project has results

Does A Parent Peer Support Program Help Parents of Children Who Need Mental Health Services Support Their Child's Care? -- The Family VOICE Study

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Results Summary and Professional Abstract

Results Summary

Results Summary

Download Summary Español (pdf) Audio Recording (mp3)

What was the research about?

Parents whose children need mental health services often feel overwhelmed. Having support from others with similar experiences may help parents manage their families’ needs.

In this study, the research team wanted to learn if family navigators helped parents of children who need mental health services. The family navigators were parents who had raised a child who needed mental health services. They were available by phone to offer emotional support and help parents manage care for their children. Family navigators also helped parents find resources for treatment and daily living. The research team compared two groups: parents who had family navigators and parents who received usual mental health care.

What were the results?

After 90 days, the research team found no differences between the two groups in

  • Parents’ feelings of involvement and control in their children’s mental health care
  • Parents’ feelings of social support
  • Parents’ satisfaction with their children’s mental health care
  • Children’s behavior
  • Amount of therapy that children received

Children whose parents had family navigators were less likely to increase doses of medicines for mental illness than children whose parents received usual care.

Many parents who had family navigators asked for help with daily living needs. They most often requested help with housing or getting food.

Who was in the study?

The study included 348 parents with low incomes in Maryland. Each child was 16 years old or younger. Children had Medicaid and were approved to take medicine for mental illness. In this study, 93 percent of parents were female, 56 percent were white, and 34 percent were African American.

What did the research team do?

The research team assigned parents to one of two groups by chance. One group of parents received one-on-one phone support from family navigators. Parents chose how often and how long they spoke with their family navigator. Family navigators offered parents emotional support. They also told parents about therapy services or other resources when parents asked for help. The second group of parents continued their children’s usual medical care. At the end of the study, the research team offered the second group of parents information on parent-support programs.

The research team asked parents in both groups to rate

  • Their feelings of involvement and control in their child’s mental health care
  • Their feelings of social support
  • Their satisfaction with their child’s mental health care
  • Their child’s behavior

The research team compared the ratings from the groups at the start of the study and after 90 days. The team also looked at how often children went to therapy and whether the medicine they took changed. An advisory group helped guide the study. The group included parents, mental health doctors, and child service workers.

What were the limits of the study?

The study was only 90 days long. This time period may not have been long enough to cause major changes in parents’ responses. The team didn’t contact children or children’s doctors directly. Doing so may have helped the team see changes that weren’t reported by parents.

Many parents in the study asked for help with daily living needs. Future research could look for ways to help families with these types of concerns.

How can people use the results?

Clinics that provide care for children who take medicine for mental illness may consider using programs like the one in the study to support the children and their families. Staff from these programs should consider whether parents need help with daily needs like food and housing.

Professional Abstract

Professional Abstract

Objective

To assess the effect of short-term family navigator services on parent and child outcomes among families with children on Medicaid who take antipsychotics

Study Design

Design Element Description
Design Randomized controlled trial
Population 348 parents of children ages 16 and younger who were approved for antipsychotic medication and have Medicaid
Interventions/
Comparators
  • Family navigator services
  • Usual care
Outcomes

Primary: parent-reported empowerment, social support, and satisfaction with child mental health treatment

Secondary: parent-reported child global behavioral functioning, child use of behavioral therapy services, and antipsychotic medication dose changes

Timeframe 90-day follow-up for primary outcomes

This randomized controlled trial compared family navigator services with usual care. The study included 348 parents of children ages 16 and younger, on Medicaid, and approved to take antipsychotic medication in Maryland. In this study, 93% of parents were female, 56% were white, 34% were African American, and 10% were other races.

Researchers randomized parents to one of two groups. Parents in the family navigator group received one-on-one telephone support from family navigators for 90 days. Navigators were parents on the research team with experience raising children who needed mental health services. Parents in the study chose when, how often, and how long they spoke with family navigators. The family navigators provided emotional support and referrals for psychosocial services and other resources to address family needs identified by the parents. Parents in the usual-care group continued normal medical care and monitoring for their children. At the end of the study, the research team gave parents in this group information on parent-support programs.

Parents completed surveys at enrollment and after 90 days. The surveys asked about parent empowerment, social support, satisfaction with child mental health treatment, and their child’s global behavioral functioning. The research team compared behavioral-therapy service claims made by parents in both groups in the 90 days before and after enrollment. The team also used pharmacy claims to assess whether the antipsychotic medication dose and number of psychiatric medications had changed after 90 days.

An advisory board of parents, child healthcare providers, and child service representatives helped to design and implement the study.

Results

After 90 days, the study found no statistically significant differences between the family navigator and usual-care groups in changes in ratings of parent empowerment, social support, satisfaction with children’s mental health treatment, or children’s global behavioral functioning. In addition, there were no differences in therapy service claims between the two groups. Children of parents who received family navigator services were less likely to have an increase in antipsychotic medication dose than those who received usual care (p=0.01). There were no statistically significant differences between the two groups in the proportion of children who switched or stopped using antipsychotic medications.

Parents had an average of four sessions with their family navigators. In addition to mental health needs, many parents asked family navigators for assistance with food services (35%) and for information on housing programs (29%). Family navigators also identified and reported four cases of suspected child abuse or neglect to Child Protective Services.

Limitations

The intensity of the intervention—using only phone calls with family navigators—and the 90-day follow-up may have been insufficient to promote greater improvement in parent-reported outcomes for the intervention group. The research team did not have direct contact with the children or observe the parents and children together, which may have limited the family navigator program’s ability to improve the study outcomes.

Conclusions and Relevance

Families with children who take antipsychotic medication and receive Medicaid have complex health needs related to economic adversity and mental health concerns. Although there were no differences in the primary outcomes between the two groups, many parents asked family navigators for assistance with managing basic living needs.

Future Research Needs

Future studies could further explore modes of providing support to parents of children who need mental health services. Future research could also specifically address the ability of these services to address common daily living needs among families with children who take antipsychotics and have Medicaid.

Final Research Report

View this project's final research report.

Journal Articles

Related Articles

The Journal of Nervous and Mental Disease

The Family Value of Information, Community Support, and Experience Study: Rationale, Design, and Methods of a "Family-Centered" Research Study

More on this Project  

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In Care Transitions, a Chance to Make or Break Patients' Recovery 
A narrative on what happens when patients are harmed by poorly executed transitions between healthcare settings.

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 confirms that the research has followed PCORI’s Methodology Standards. During peer review, experts who were not members of the research team read a draft report of the research. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. Reviewers do not 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 how the research team analyzed its results or reported its conclusions. Learn more about PCORI’s peer-review process here.

In response to peer review, the PI made changes including

  • Clarifying the role that patients and other stakeholders played in the development of study aims and other processes before and during study implementation
  • Providing more details in the Methods to address reviewer concerns that the report lacked several reporting elements required by the CONSORT statement. This included describing modifications to the study eligibility criteria and sample size
  • Clarifying and describing their assumptions regarding missing data, and describing sensitivity analyses performed to determine whether results differed when including data from families who did not complete the study, or who did not use the Family Navigator intervention. The result was no change in the outcomes of the study, indicating that the intervention did not have a significant effect on most primary and secondary outcomes even when limiting the analysis to families who completed treatment
  • Revising the Results and Discussion sections of the report and the abstract to clearly state the primary and secondary outcomes, and acknowledge null findings. These were separated from the more positive post-hoc analyses

Conflict of Interest Disclosures

View the COI disclosure form.

Project Details

Principal Investigator
Gloria Reeves, MD
Project Status
Completed; PCORI Public and Professional Abstracts, and Final Research Report Posted
Project Title
The Family VOICE Study: A Randomized Trial of Family Navigator Services Versus Usual Care for Young Children Treated with Antipsychotic Medication
Board Approval Date
December 2012
Project End Date
May 2018
Organization
University of Maryland Baltimore
Year Awarded
2012
State
Maryland
Year Completed
2018
Project Type
Research Project
Health Conditions  
Mental/Behavioral Health
Mild Cognitive Impairment
ADHD
Multiple/Comorbid Chronic Conditions
Trauma/Injuries
Intervention Strategies
Other Health Services Interventions
Patient Navigation
Training and Education Interventions
Populations
Racial/Ethnic Minorities
Low Income
Rural
Children -- 18 and under
Funding Announcement
Improving Healthcare Systems
Project Budget
$1,455,602
DOI - Digital Object Identifier
10.25302/3.2019.CER.997
Study Registration Information
HSRP20143360
NCT01804582
Page Last Updated: 
February 20, 2020

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PCORI 2021 and Beyond: Opportunities for Funding and Involvement in Patient-Centered Research
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