Families tend to wait for issues to escalate beyond their ability to manage them before seeking higher levels of care. This article summarizes the findings of ten interviews with parents who have supported adult children through mental health and addiction struggles. Parents need a place to reach out to before things fall apart. Together, let’s challenge the image of the caregiver who “handles it all” and instead, let’s open doors for families to seek help sooner rather than later.
Once you listen to enough individual stories, conduct a bit of lay research, and comb over recent news it is not a leap to conclude that our mental health system in the US is broken. Especially when it comes to people whose needs require coordination between various specialists, disciplines, and healthcare systems.
There is a disconnect between an individual’s escalating mental health concerns and receiving needed support for their issues in a timely manner, especially when it comes to serious mental illness and the need for more intensive support, such as residential treatment.
Parents and supporters of teenagers, young adults, and adults in need of behavioral health, substance abuse, or mental health treatment need access to credible, trusted, and unbiased resources for support. They need help in determining what is appropriate for their child or family member and how they may access the best services to fit their needs.
The research in this article was conducted in 2016 by graduate students Kali Duggins and Stephanie McMahon while completing a Masters degree program at Johns Hopkins University. Stephanie and Kali worked together to conduct in-depth interviews with ten parents across the country who had experience supporting an adult child with serious mental illness.
Key Themes That Emerged From The Interviews
As a result of these ten interviews, several key themes emerged:
- For parents, the emotional and mental health of adult children is a primary concern
- Experience of the mental health system in general has been negative
- Being treated as a part of a system, and not an individual, has been a common and negative experience
- Parents feel helpless and confused when they have been in the primary support role for a loved one with mental health or addiction issues. While they are good at coordinating schedules and tending to the daily logistics of healthcare, helping a family member with major mental health issues has proven overwhelming
- Parents do not feel like they have the answers or know who to turn to and when; they often witness firsthand the fractured mental health system when attempting to get help for their loved one
- Parents will exhaust all options before reaching outside their families or support networks for help
- Parents perceive a gap between accessing resources and actually getting the support they need. Knowing who to reach out to and why, and getting a helpful response in return, is an issue
- Read more in-depth about these themes below:
Theme 1: Emotional And Mental Health Of Children A Primary Concern
Interviewers Stephanie McMahon and Kali Diggins asked:
“When it comes to your child’s wellbeing, what concerns you the most?” and “Have you ever had concerns about your child’s/children’s mental health?”
When it comes to the overall wellbeing of their child, the majority of parents are most concerned about their emotional and mental health.
When asked more specifically about mental health concerns for their children, the majority responded that they had had concerns about their children’s mental health in the past and the majority have sought help for behaviors having to do with depression, ADHD, and mood fluctuations.
Direct quotes from parents:
“I worry if she’ll ever be normal and feel good about herself.”
“I worry about keeping them grounded and confident in who they are.”
“Reaching out for help is uncomfortable for a lot of young adults.”
“He was already seeing a psychiatrist” and “Both my boys have seen counselors
for several years, and my oldest has been hospitalized after what seemed to be a
suicide attempt.”
“Our oldest daughter has always been really down on things. We haven’t been
sure if she’s depressed, but some of the other stuff seems like she is.”
Theme 2: Experience Of The Mental Health System Negative In General
When asked, “What is your personal experience of the mental health system?” the majority reported that they had had a negative to neutral experience of the mental health system.
Confusion and frustration were common experiences when seeking help for themselves or a family member. The majority have felt like the services they received fell short of their needs.
Direct quotes from parents:
“It was a nightmare. We were treated like baggage and like we were stupid.”
“With my daughter, I’ve just felt helpless and like people were walking textbooks,
spouting off the latest trend.”
“My only understanding is that the system fails more than not.”
“Switched to a different therapist for 1 year, not much improvement. Therapist says “you are OK”. Maybe another third, person will do the trick? Thinking of switching once again.”
“…when son had a suicide attempt, we did not have a good experience; [the doctor] just wanted to medicate. There are aspects of it, when a crisis happens, that need to be improved.”
Theme 3: Feeling Helpless And Confused When In The Primary Support Role
When asked questions about what role they play in supporting their children’s mental health and what actions they took to support them, the majority responded that as the primary support, they often felt confused, unsure of what to do, and on the periphery.
About half of those interviewed coordinate all the logistics of care. The majority waited for the behaviors to become overwhelming before taking action and seeking help.
Direct quotes from parents:
“It’s been like I or the people like me have been trying to hold something together
that’s bigger than us and we can’t really do that very well. Because it’s a broken thing and a broken person.”
“I am their caretaker, scheduler, transportation. I travel with my little calendar everywhere.”
“It wasn’t clear for a long time what or if something was really wrong, so we just waited, thinking she’d grow out of it. When she didn’t, we thought we couldn’t handle it, so we asked her regular doctor to help and set us up with someone if they could.”
“I was more of the periphery. We had a close relationship eventually. But when the illness was unmanaged, it pushed me away. I felt unsafe.”
Theme 4: Finding Professional Help Is Challenging
The majority of parents interviewed stated that access to options are endless online, but support with knowing who or where to choose, and why, is scarce. When faced with a mental health crisis, all those interviewed stated that they would turn to emergency services first by either calling 911 or going to the emergency room and then rely on the hospital staff to determine next steps. The majority of participants stated that their health insurance companies have not been helpful in finding treatment options.
Direct quotes from parents:
“I think we have access [to options] but no support. So I don’t know what we
really have access to.”
“It was a trial and error process to find the right [therapist].”
“We tried looking at reviews but people aren’t really so apt to review their
therapists!”
“I think the best thing is to call 911 [during a crisis] and let them handle
everything after that. I would assume that the doctors at the hospital would take
care of the rest if they needed to go to a program.”
“We’ve talked to our regular medical practice and they just gave us a list. They
didn’t really help.”
Theme 5: Residential Treatment Seen As “Worst Case Scenario” Option
The majority of those interviewed had little familiarity with residential treatment and believed that residential treatment is needed when someone is a harm to themselves or others.
Several believed that residential treatment is needed when all other options have been exhausted. Several described hospital-like or locked settings when imagining a residential setting. About half mentioned negative connotations with the image of residential treatment and many pictured it as a hospital setting.
The majority of those interviewed never felt things were “bad enough” to warrant residential treatment for their children or loved ones. The majority have never been referred to a residential treatment program by a mental health professional and less than half had it suggested in passing by mental health professionals with little follow-up.
Direct quotes from parents:
“Never thought it was to the point that I needed that much help. If I felt that they
needed it, I would not think twice. I would reach out. As a pride thing, I feel like that would be my last resort.”
“I know about 12 step and rehab, but for depression and stuff I only think of padded walls and drugs. It’s always seemed sad to me. I don’t know much about them.”
“Residential treatment sounds scary. Do you live at a hospital?”
“[Hospital staff] told us that a residential program was what was needed, but no one helped us find one. The team at the hospital sent us away like he was cured and told us to follow up with a counselor and maybe think about some meds.”
Parents supporting adult children with serious mental illness need to have access to professionals willing and able to support the supporter; to act as an arm to lean on in difficult situations. Parents also need a trustworthy and available source of information that will treat them and their loved one as individuals and not numbers is a system.
How can we help one another reach out for help, before a workable situation turns into a full-blown crisis?
#residentialtreatment #caregiverfatigue #mentalillness #adultchildren #crisismanagement