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Featured Discussion 03

Parent-Led Research

This month's Featured Discussion focuses on a research report examining parent perspectives on children's mental health in Massachusetts. While the results of the research are interesting in and of themselves, the study deserves attention for another reason.

The research project was led by parents from PAL (Parent Professional Advocacy League, the Massachusetts state chapter of the Federation of Families for Children's Mental Health), in collaboration with researchers from Health Care for All, a health care consumer advocacy organization.

We encourage you to read the report below, and post your reactions, including opinions about:

Family- or consumer-led research,
Research partnerships between consumers/families and researchers (including challenges and opportunities provided by such partnerships), and
The study itself and the results.

Speak Out for Access: The Experiences of Massachusetts
Families in Obtaining Mental Health Care for their Children

The children's mental health system in Massachusetts and across the country is in crisis. Families are reporting major difficulties locating and accessing services for their children and adolescents. Often when one service is obtained, linkages to other services are few and far between. Additionally, families report limited success in finding supports when their children first begin displaying signs of mental health needs. However, there is very little data describing either the specific barriers families face or how often these obstacles delay treatment. Health Care For All and Parent/Professional Advocacy League have been working together for more than a year to survey parents* of children with mental health problems. Their responses clearly reflect the numerous barriers to access.

At the time of this writing, 301 responses have been received. The survey results describe significant problems with access to care, the sufficiency of information provided to families, and parents' involvement in treatment. Additional concerns identified by families included the lack of early identification and treatment and a lack of knowledge about mental health in the public schools.

Six recommendations are listed at the end of this report. Families described again and again the barriers to getting the services their children needed and often offered suggestions for how the mental health system, both private and public, can be improved.

First, access to an array of community-based services must be increased, with less reliance on crisis care. Several findings support this:

33 % of respondents waited more than a year before receiving treatment as often as needed, and almost 40 % experienced a delay in treatment because they couldn't get an appointment or the services they needed were too full.
42 % of the children had violent crises. 40 % were self-injuring during their most recent crisis and 26 % were suicidal.
43 % of the parents believe their child's crisis was at least somewhat preventable.

Second, parents should be included in the design of children's mental health programs from the initial planning stages.

Almost half the parents were not at all satisfied or only somewhat satisfied with the amount of involvement they have in their child's care.
Many parents wrote that professionals "pushed aside their concerns" and blamed them for their children's illnesses.

Third, a spectrum of services must be available, regardless of who is the payer.

60 % of respondents said they worry at least some of the time that their child will hurt him/herself or others because needed services are not available.
26 % stated that their insurance always or often won't cover services that their child needs.
52 % of children waited 1 to 12 hours for an admission to a hospital during a crisis while an additional 16 % of children waited 13 hours or more.

Fourth, policies must be put in place to connect the points of entry, increase communication and reduce fragmentation.

76 % of respondents said providers were not at all helpful or only somewhat helpful at linking them to other resources about their child's diagnosis.
44 % said they were not at all satisfied or only somewhat satisfied with the amount of communication between the hospital and other mental health providers.

Fifth, public schools must be educated about mental health problems in children and adolescents.

50 % said that their interactions with the school system had not been satisfactory because "school system professionals do not understand mental health issues."
30 % of the parents related that their child's most recent mental health crisis had occurred at school.

Sixth, Massachusetts should pass legislation that mandates mental health screenings by age 4, either through the early education or primary care settings.

Nearly half of the parents reported that their child first began to show signs of a mental health problem by age 4.
Again, nearly half said that their child's primary health care provider never or rarely asks about mental health.

*While the majority of those surveyed were parents, respondents include other direct caregivers including grandparents and foster parents.

Written by: Ariel Frank, Josh Greenberg and Lisa Lambert: llambert@fcsn.org

Read complete report at http://www.ppal.net/downloads/speakout2.pdf

Comments:

Where can I lead medical health insurance companies, Blue Cross, Blue Shield, Aetna, Humana, Unicare, Anthem, Carefirst, and more! Thanks. WBR LeoP Posted Saturday, January 20, 2007 at 02:22 PM

Can we still post comments to this? Posted Saturday, July 23, 2005 at 11:28 AM

Parent led research opens the door to a wealth of perspectives. In the same vein as "family friendly evaluator", who posted prior to me, it is vital to bring parents to the table who are not within any organizational framework.

Sticking with the familiar and experienced can be short sighted. It is worth the effort to draw out those who are unaffiliated.

My favorite "buzz word" of the past few years is NETWORKING. One contact often links to another. Parents are often quite willing, with some mentorship, to participate in projects that will ultimately enhance the childrens mental health system. Posted Monday, April 21, 2003 by ctmom05@yahoo.com at 08:34 AM

Any researcher is potentially biased in that they may be rooting for a specific result over another. I don't see that the "danger" from family member bias is necessarily any greater than from any other less obvious source of bias. I think good training and integrity is more important than who is doing the research. I think one of the sources of skepticism regarding family-led work is about the quality of the work--when the methods are clearly addressed, the doubts would decrease. Posted Monday, February 17, 2003 at 02:10 PM

Famiy involvement in research seems to be a no-brainer to me. As in any research area, you would want the experts involved. If we were doing research in Marine Wildlife, we would involve the fish and the ocean that holds them.

Yes, I understand how in the strictly scientific sense the results are biased. So how about putting some research dollars to some studies that can have more controls, yet still be sensitive and non-obstrusive to families?

Also, I would hope that simply because the information is not strictly scientific that folks would not ignore the 301 voices of pain and suffering and try to be more responsive to kids and families.

Let's all keep trying and keeping an open mind.
Sue Posted Friday, February 14, 2003 at 07:51 AM

I am a mental health professional and theb parent of a daughter with Schizophrenia. I know first-hand about being shut out of my daughter's treatment. I could not even get anyone treating her to return my calls.

A slogan of the Independent Living Center movement has been: "NOTHING ABOUT US WITHOUT US". If we in mental health want to provide the best services to the most people, we need ato have the consumers involved in planning the delivery of the services. Family Centered Care involves partnership and collaboration between parents, professionals, and children old enough to provide input on how services will be delivered. There are soome efforts to provide family-centered services in many states, but it should become universal. Also, blame has no part in helping anyone. It cannot help find solutions and can only impede colaboration towards finding solutions. Anyway, human behavior is much to complex to be able to fairly assign blame. Posted Thursday, February 13, 2003 by Steven Sproger, LCSW, Dad at 10:26 AM

We have recent experience in our state with family-initiated research, and the results tend to be discounted because the family organization is seen as having a "negative bias," so that problems will be over-emphasized. I'd really like to hear how this project and others have worked to insure and communicate and "even-handed" approach to question framing and data collection. And the whole issue of credibility.
Posted Thursday, February 13, 2003 by Family-friendly evaluator at 09:38 AM

I am very pleased to see this example of research in which paraents had such an important role-- the major role-- in defining the questions, in designing the methods, and in analyzing the data. It is important for stakeholders to be able to represent their own perspectives throughout the research project, not just as "subjects".
Posted Thursday, February 13, 2003 at 09:25 AM

I think it's great to see this report and to know that parents were instrumental in the design of the project as well as in data collection and analysis. The questons that were asked are those which are of greatest importance to parents. Posted Thursday, February 13, 2003 at 09:06 AM

It certainly looks to me like having the parents be in charge of the research project led to an examination of the questions and issues that are most crucial to families. We are concerned with getting our kids what they need as soon as possible. Posted Tuesday, February 11, 2003 at 03:23 PM