Leave me Alone, Help Me Recover – Family Involvement in Anorexia Recovery

Anorexia Recovery

Every family that we work with shares the same three values. They value health, they value education, and they value the relationships within the family. When an eating disorder enters into a family, it challenges how each individual will hold all three of those values and thus plays a role in anorexia recovery.

It also puts a huge strain on family relationships when, for example, the parents want the individual to get help, but the individual is ambivalent to do so.

In seeing this struggle, we wanted to find a way to quantify and answer the question, “what do people really think about having their family member involved in treatment?”

We have found that adolescents with eating disorders are often unable to make decisions that are going to foster recovery and, thus, parents must be empowered to lead the recovery. As such, caring for a child with an eating disorder is an extremely stressful experience with high levels of caregiver stress, anxiety, and depression.

Parent and Adolescent Resistance

Resistance to this comes not only from the adolescent but also from the parent.

The parent may say, “I don’t want to ruin our relationship so I shouldn’t be involved.” Additionally, the adolescent may say, “I want independence, I can do this myself, please don’t be involved.” How do we reconcile this resistance with the fact that we know that family involvement in anorexia recovery treatment works?

We wanted to learn how people feel about their family member being in treatment both before and after it. For this study, we hypothesized that adolescents would report that family involvement was unpleasant during treatment.

I think that we can all imagine that it would be an unpleasant experience being part of family therapy, you’re in a very vulnerable position and it isn’t something a lot of people have done.

However, we also hypothesized that, after treatment, the relationship with their parents would not be negatively affected and that, after treatment, adolescents would feel grateful that their parents were involved.

We reached out to 64 families that had been discharged from the UC San Diego Eating Disorder Center. They had all participated in our PHP program, and, the majority had also participated in our IOP program.

The average length of the stay was about four months, and we invited them to participate via email.

Family Involvement in Treatment

First, I want to describe what I mean when I say “having your family involved in treatment.”

I think a lot of people think of just SVT or Maudsley therapy techniques, and that is one way that family can be involved, but, for the purposes of this, I want you to think with a wide lens of what it means to be involved in treatment.

So, one is family therapy sessions, and this could be DBT, Maudsley, or Family-Based Therapy. Additionally, it could be DBT skills groups with the family. In DBT skills groups, the adolescent and their parents were together with other families and would all learn, collectively, the same skills.

The rationale here is that learning a new skill or habit is difficult, so, we want parents to be learning skills alongside their adolescents so they could both remind their adolescent to use them. More importantly, they can also model the use of them for their adolescent.

We talk a lot, in regard to skills, about treating it like an exercise in that you have to build up that skill’s muscle. For example, you might want to be able to use distress tolerance and being able to urge surf when you have the urge to restrict, or binge/purge.

But, if you were only trying to use that skills for high-level behaviors, it would be very difficult, so, we want people to practice with low-level behaviors such as using distress tolerance skills when you’re on the phone and arguing with the cable company or stuck in traffic. Then, we want parents to be able to model these skills as well so that they become a part of the fabric of the family.

I recall a family who, for the winter holidays, the adolescent had woken up and the father had gone out and bought these beautiful glass-like tall vases and filled all of them with squishy brains and different distress tolerance things such as fidget spinners, silly putty, etc.

He put them all over the house and brought the idea of having distress tolerance tools at-the-ready for the family. That is something he got from the DBT lesson of building a distress tolerance box.

Other skills may include “Brain Wave,” which Laura Hill uses. This displays the adolescent and their parents and other family members as different parts of the brain. We talk about how different parts of the brain function differently or the same when someone is struggling with an eating disorder. Another is called “The Gauntlet.”

These are all just groups designed to help parents experience, on a small level, what it might be like to have an eating disorder and be in anorexia recovery. It is also a way to continue to separate the eating disorder from the person who is suffering.

Parent Support Groups

One thing to look out for in parent involvement and support groups is that, sometimes, if parent-only support groups are run a certain way, people can report a lot of drop-outs and feel really helpless.

What happens is that, if a parent-only support group is not properly run, people spend a lot of time venting about all of the stressful things that are happening with their loved one.

While it is wonderful to have an outlet and share an experience that others may be having, it could also create a feeling of hopelessness when you’re just hearing all of these awful stories of people not doing well.

We also know from literature that venting doesn’t actually help relieve your stress, so, we make sure that these parent-only support groups are following a DBT model so that there is some structure.

There are also Psychoeducation groups where parents can learn about eating disorders such as the neurobiology or the medical consequences.

This isn’t something we do just once. We do it over-and-over again because, like anything in life, you’re going to fatigue from it, you’re going to drift away from your original goal, so we want to always remind them of why this is so important and why they are working so hard.

Parent Management Training

We haven’t found the perfect name for this group, yet, but I want to clarify we aren’t managing the parents, we are training the parents in a different kind of management.

We used Kasdan’s research, really looking at some strict behavioral psychology to see, “what are different ways that you validated through verbal and nonverbal means?” “What are different ways you give attention?” “How do you reward behaviors that you want to see more of and how do you ignore or properly consequence behaviors you want to see less of?”

We really strongly emphasize that parents do not cause eating disorders, there is no evidence to suggest that, but, that doesn’t mean that there aren’t behaviors that parents might need to adjust in order to foster a higher chance of recovery or more ease into recovery.

This group can be a good place to look at that and see that there are things a parent may be doing that are reinforcing the eating disorder.

For instance, maybe every time the family sits down for a meal with their child, the child initially says “no,” then you argue with them about why they should do it.

They then start screaming, and once the screaming starts, you just want to the screaming to stop because it is very stressful, so you just say “fine,” and they get to leave the table.

This is a great example that it makes sense why the parent doesn’t like the screaming, but it sends the child the message that the screaming works and that if they scream, they don’t have to eat and the eating disorder learns that as well.

Family Group Meals

Here at our center, families have four meals per week with their child, so, two dinners, a breakfast, a lunch, and four snacks.

It is important parents attend this so that we can work with them when the eating disorder comes out, not just when they are doing well in treatment.

What these meals will look like is it is a buffet-style setup at the beginning of the line, and there is a dietician at the end of the line.

You will put food on the plate for your child or adolescent, and the dietitian will give input if you need more dairy or nuts, etc. or if you are pushing them too hard or not enough.

While the meal is happening, we have therapists and dietitians walking around so that, if we start to see eating disordered behaviors or resistance, we can pull the family member aside and either whisper to them at the moment or pull them out and give them ideas of what they can do to get their child eating.

Our belief is that we could never be an expert in someone else’s child, but I can train someone else to be an expert in eating disorders.

This will help them to be able to continue recovery at home but also prevent relapse so that they don’t wait until their child has lost a lot of weight or resumed behaviors in order to start intervening, they can start right away.

Parent Phone Coaching

With this, the caregiver will have the Family Therapist’s cell phone number, the adolescent has their Individual Therapist’s cell phone number, as, consistent with the DBT model, they go out into the world and reach into themselves to use their skills, but this is a kind of “helpline” if they don’t know what to do.

For example, a family therapist may get a text saying “dinner is going great, but she’s stopped eating all-of-a-sudden, what do I do?”

The family therapist can text back asking what skills they have tried, what skills might they want to try.

Treatment Team Meetings

A final way family members can be involved is to invite them into meetings with other treatment team members.

Anorexia Research Design

The research design for this study is what is considered Mixed Method Design, meaning we wanted to have the quantitative and qualitative measures complimenting each other with both a numeric expression of change as well as hearing what the adolescents had to say about their experience.

It is important to note that the respondents were heterogeneous in diagnosis and at various stages of recovery. They were all asked to reflect retrospectively and comment on current feelings.

We used a 7-point Likert scale, one being very negative, seven being very positive. We asked them, “in the beginning, when you first started treatment, how did you feel about these various aspects of family involvement?”

We specifically asked about family therapy groups and family meals. We also asked them, “at the beginning, when you first started, what was your relationship with your parents like?” and also “What was your relationship with your therapist like?” We asked about those same things, asking “what are your current impressions and how do you feel about those things today?”

We wanted to ask about the family therapists for the clinician. It can be challenging to go into the mental health field as a warm and compassionate person and push people to do things they don’t like. Therefore, we were curious as to what the thoughts are with how the adolescent felt about their family therapist.

There is an anecdote that is often shared in our clinic about one of our senior psychologists who worked with this teen who didn’t say a word to the psychologist.

She just talked to her parents, and the parents kept putting 1-2 pounds per week on her, she didn’t really talk to her psychologist that much. She came back about a year-and-a-half later and said “thanks for doing what you did.”

I think that is a powerful story that the end-goal is not necessarily for them to like every minute of treatment but for the treatment team to work and continue working.

We also asked open-ended questions such as how they felt about having their family involved and what was helpful about having their family involved. We also wanted them to discuss their relationship with their parents, how that changed over time and then also what they thought about the timing of when to involve families.

In my career, I have noticed that it is not uncommon for an individual to do one to three treatment episodes before having any family involvement, and I wondered what they thought about that.

So, we asked questions such as “are you glad you tried it first without your family?” or “do you wish your family had been involved earlier?

Results

29 adolescents responded, and they were between the ages of 12 to 21. Half of them had a diagnosis of anorexia, a little over ¼ had a diagnosis of bulimia, and the other 17% were EDNOS. We did not have any respondents with Binge Eating Disorder or ARFED.

The majority had reduced the symptoms that they had when they first started, so, most of them were in working recovery or making progress in their recovery.

In the beginning, we saw that all of them thought very unfavorably about family therapy, family groups, family meals, about their family therapist, about their relationship with their family, and about the helpfulness of having their family involved.

It was interesting to ask is there one aspect of having your family involved that’s more favorable to adolescents than others because perhaps we could use that to get our foot in the door. We thought “okay they don’t mind this as much; let’s start with this and then add other types of family involvement.

However, that was not the response. Across the board, they weren’t super stoked about having their family involved. Then, when they looked back, the average response was that they had favorable impressions of having their family involved.

They were all very glad that they did family therapy, family groups, family meals. They saw the relationship with their therapist improve. The most significant change was the relationship with their parents.

Comments

The majority of respondents, 26 out of the 29, talked about the anger, the shame, and the fear that they had about their families being included in treatment.

We had guessed that they didn’t want this involvement because they’re teenagers and want to be independent, but it turns out that shame and fear were really the driving factors.

Many reported, “it made me uncomfortable, I did not want my family to see how bad I had become,” and “I was very cautious about having my family involved because the main reason I went into treatment was to avoid the eating disorder ruining my relationship with my mom.”

Or, “I really wanted to just recover by myself and not have help,” and, lastly, “I thought it was not going to be helpful and just make things worse.”

A lot of people echoed this idea that the eating disorder was already destroying their family and that having them involved in treatment would ruin their relationships even more.

There was also this shame where many people mentioned things such as, “My parents are already doing so much taking time off work or the cost of treatment. I didn’t want to add one more thing that they had to do.” So, this fear of burdening parents was also a driving desire.

I think a lot about how we can use this information. I think of all of the parents that have told me, “I don’t want to be involved because I don’t know what I’m doing” or “I’m just going to make things worse” and “he told me he doesn’t want me to be involved.”

If we were able to say, “the data shows that he doesn’t want you to be involved because he doesn’t want to burden you,” I think most parents would say “Oh gosh, this is my child, this isn’t burdening me at all, this is what I want to do.”

This could help the parents understand where their child’s reluctance comes from, from a desire to protect the parents, not that they would be harmful or to shut them out.

So, of those 26 out of 29 that said their families being involved made they angry and that they were afraid and ashamed, all but one of them expressed very positive impressions of having their family involved.

One person wrote, “I thought it was valuable even though I was annoyed.” I think that is an important aspect to prepare the parents for, that enjoying something isn’t the same as whether or not it is valuable.

As such, your teen might not like it at first but may see the value of it in the long run because of how meaningful the relationship becomes and how much the support ends up meaning to them.

An 18-year-old individual that was making the transition toward independence and college so the transition was awkward but, in the long run, it made her closer with her parents.

Some else said “they helped make sure I was eating my meals and they monitored everything even when I didn’t want them to, and they were definitely a big part of my recovery,” again, echoing that they were helpful even though they didn’t want them involved.

A lot of individual reported being happy their families were involved because they were held accountable for their actions at home and were under constant supervision after and during meals.

Others reported they were happy their family was present in their treatment at UC San Diego because they were able to learn skills to help them understand better how they were feeling and what they were working on in order to recover.

Helpful Family Involvement

It is important to note that we not only asked what was helpful family involvement but also asked what was unhelpful in this. These responses were more wide-ranging and different for every person.

Some felt the feeling of a loss of independence was unhelpful; others felt a feeling that their parents were nagging them and the guilt and reaction of their parents’ worries were unhelpful.

Others also expressed critiques of how the parents could have done more, which I found interesting. Several people took the time to write that they felt their parents should have inserted themselves more.

Now, going back to what was helpful, I want to point out what specifically was deemed as helpful. Meal planning, preparation, and plating came up again-and-again as being helpful.

Many reported the sentiment that they didn’t want them to do it but “my eating disorder was so loud, I was not going to be able successfully to do that myself.” They also mentioned making me eat, helping me stay on track at home, and separating the eating disorder from the child was helpful.

One person said, “even though it bugged me, as I look back, I see how them being there would help me in later times when I discharged, or else I probably would have relapsed.”

This came up again and again as people stepped down into IOP and into weekly outpatient. Having this cushion to make sure they did not relapse, having the safety net of their family was helpful.

They felt they had someone to turn to when they needed it and had people to keep them accountable for their sleep, hygiene plan, exercise plan, activity, commitments, etc.

One individual pointed out that an eating disorder isn’t just about eating or stopping bingeing, it is about learning skills to regulate their emotions and that what goes along with that is often improving your sleep and becoming more active instead of isolating, as most with eating disorders do.

So, when we talk about family being involved, we aren’t only talking about them making sure the individual isn’t purging or is eating but that they are helping them to engage in those other pro-health behaviors that help to build a healthy and holistic self.

Someone else talked about how having family groups on Saturday’s taught them good coping skills and taught their parents to understand better what they needed to do to encourage them to be healthy.

Everyone reacts differently to stress, and it is stressful when you see someone that you love engaging in behaviors that aren’t pro-health, that isn’t going to help them get toward their health or life goals.

When experiencing that frustration, some people get really worried and small and quiet and become passive and withdraw.

Others may get really loud, and scream and big family fights happen.

A lot of teens and young adults express how helpful it is to have their parents have the tools to deal with how stressful it is getting through an eating disorder.

Relationship with Parents

One thing that we noticed is that people rated the parent-child relationship starting in very different places, with some being very hostile and some expressing positive relationships.

Despite starting in different places, every participant except one described that their relationship with their parents was better than before.

Someone wrote, “during the beginning, I closed off from my parents but, through all of it, and because of it, we have grown closer.”

Someone else wrote, “Before treatment was very bad, during treatment there was a lot of stress and obsessing over my recover, now there is still stress but I appreciate them so much, and my respect for them is a lot higher.”

For parents, there is a lot of deferred gratitude, you’re not going to get a lot of thank you’s, but this is one place where all the hard work does eventually pay off if you can tolerate the discomfort.

Timing of Family Involvement

About half of respondents said that they wish their family had been involved in treatment earlier or wish their parents would have been involved in treatment earlier in hindsight.

The other half said that it was well-timed.

This is interesting as, in admissions, I often hear, “my adult/child wants to try to do it on their own so let’s let them try to do it on their own first and if that doesn’t work, I will get involved.”

While there is some logic to that such as thinking it will preserve the family relationships, it is important to note that multiple attempts at eating disorder treatment is money being spent on treatment that could be spent on building a life worth living, it is more time away from friends and siblings and normal activities and health.

I think this data really shows that it makes sense to start with the family involvement instead of adding it in later.

Conclusions

Both the quantitative and qualitative data did align with what most clinicians observe: that adolescents are initially resistant to including their parents in treatment.

However, regardless of the reasons for wanting to exclude their families, ultimately, the adolescents all reached the same conclusion at discharge: that family involvement was crucial and instrumental in their recovery.

Adolescents demonstrated a significant change in opinion on the helpfulness of all aspects of family involvement.

This finding, we hope, will encourage parents to participate in all aspects of treatment, regardless of their initial reservations by their adolescent.

When we refer to a child regarding eating disorder treatment, I mean 8-year-olds or 15-year-olds, but I also mean 28-year-olds. I mean someone’s child, not that they are of child-age. It does become more difficult to make your “child” seek treatment when they are 18 or older, so there are a few Caregiver Tips I have for parents.

Identify Your Leverage

A lot of the adults that come into our program still have family members that they are dependent upon whether it is paying a cell phone bill or housing or car.

Eating disorders can get in the way of someone being able to hold down a job or support themselves so you may have financial leverage over your child.

You may also have school leverage, as some parents are supporting their child in pursuing their schooling.

Learn How to Use Your Leverage

Determine what your leverage is and work with someone to think about how you can use that. It is realistic to say to your loved one, “I want you to get an education and I want you to be alive to use that education.”

We see a lot of success in parents saying, “I love you so much that I’m not going to let you die and so we are not going to be paying for your college unless you do X” or “you’re not going to continue to live with us unless you do “Y.”

Once you identify your leverage, it can be helpful to work with a therapist to help figure out how to write up a contract and stick with it.

Learn Skills to Manage Your Discomfort

It is incredibly uncomfortable to help someone get treatment that they are ambivalent about getting. It is also uncomfortable using your leverage, making threats, and then also seeing through on the threats.

We have seen many adult children who have called their parent’s bluff, and it took a lot of support for the parents to do what they said they would do if their child didn’t get care such as stop paying the bill for college or cutting off the cell phone.

Often times, the adult children have heard these threats before and, through behavioral learning, if the threats didn’t come to fruition, they have no reason to think it will come to fruition this time.

It can be really helpful, then, to have someone supporting you through the discomfort that you will naturally feel when you are putting a natural consequence in place for your adult child.

Caregiver Tips for Burnout

I also really encourage parents and spouses of adults who are struggling with an eating disorder to get support.

We know a lot about caregiver burnout for other illnesses such as cancer or Alzheimer’s disease and eating disorders carry this same risk. Caregiver burnout for eating disorders is unique for a few reasons, however.

You have the traditional caregiver burnout that comes with any chronic illness, but you also have the unique aspect of eating disorders that the individual who is ill is engaging in unhealthy behaviors that are resulting in this illness.

So, with people with cancer, you don’t often see an individual doing things that can get in the way of, or be harmful to, their health. It is hard because seeing a loved one struggle with an eating disorder means seeing them give into urges that are not healthy.

This is difficult and has a huge strain on the relationship. Caregiver burnout related to eating disorders is also high because the treatment landscape for these disorders is very confusing.

In the US right now, approximately 95% of treatment centers are for-profit owned by private equity companies and have awesome marketing going on, so, you Google “eating disorders” and you see many contradicting things that say, “don’t send your child to residential” or “do send your child to residential.

This makes it really hard to know what to do and where to encourage your loved one to go to get help.

That confusion often compounds the stress that caregivers feel.

Caregivers also often report they have incurred a significant financial burden in trying to get their loved one help, which exacerbates the stress that they are already having.

This is why I recommend that, if you have a loved one struggling with an eating disorder, you get some support for yourself.

An Individual’s Motive to Change

One final aspect parents can consider with their loved one struggling with an eating disorder is to determine what is/will motivate them to change? Some individuals will tell me “you know what, purging is working for me. I know it isn’t ideal, like smoking cigarettes, but it is my coping skill.”

Other people may tell me, “I’m just choosing to keep my weight here, you guys say it’s unhealthy, but my labs look good enough, so I’m not interested in changing how much I weight.”

When this happens, I move away from the eating disorder behaviors and focus on other things. Mainly, I ask them where their mind is spending most of its time.

I ask, on a scale of 1 to 10, with 10 being “almost all of my time when I’m awake” and one being “almost never when I’m awake,” how much time do you spend thinking about your body.

Many of them will say around a 9 or 10. I then ask them where they want that number to be and often hear 4 or 5, sometimes 2 or 3. I ask the same question in regard to how much time they spend thinking about food and get similar responses.

Then, I ask, “what would you think about with all that extra brain space” and there is usually a smile and they have an answer.

That is something people are usually very motivated for, to reclaim their brain space, to get this stuff monopolizing their thoughts away.

There are also a lot of people that are motivated to stop being depressed, as well.

As individuals get older, they may choose to have children, and this choice can be a huge change in their motivation.

This is a key to treatment, finding and focusing on what the individual is motivated to change. The final recommendation I have is to talk. Simple as that.

Teens may not want to include their parents, and spouses may not want to include their partners, but just because you don’t want to do it doesn’t mean it doesn’t work.

Reduce the barrier of not talking and engage in family treatment. Take the courageous step toward family inclusive interventions because it truly does work.

---

Source:

Virtual Presentation by Erin Parks, Ph.D. in the May 17, 2018, Eating Disorder Hope Online Conference II: Anorexia Hope & Healing in 2018.

Please view the press release Here.

---

Author:
Erin Parks, Ph.D. is a clinical psychologist and neuroimaging researcher who is passionate about making scientific research accessible to everyone. Dr. Parks spent a decade using neuroimaging tools to study brain plasticity and development before she began specialized clinical training in eating disorder treatment. Dr. Parks graduated from Northwestern University and UCSD/SDSU’s Joint Doctoral Program in Clinical Psychology before completing her internship at UC San Francisco and then taking a post-doctoral fellowship at the UC San Diego Eating Disorders Center.

Dr. Parks has served as a psychologist in their Adolescent Clinic and inpatient medical behavioral unit, as a manager in their Adult Clinic and Pediatric Clinic, and as a co-lead in their world-renowned one-week intensive programs. Currently serving as the Director of Outreach and Admission, Dr. Parks combines her clinical experience and research knowledge to help the public be better-informed consumers of mental health services.

---

Transcript Editor: Margot Rittenhouse is a therapist who is passionate about providing mental health support to all in need and has worked with clients with substance abuse issues, eating disorders, domestic violence victims, and offenders, and severely mentally ill youth.

As a freelance writer for Eating Disorder and Addiction Hope and a mentor with MentorConnect, Margot is a passionate eating disorder advocate, committed to de-stigmatizing these illnesses while showing support for those struggling through mentoring, writing, and volunteering. Margot has a Master’s of Science in Clinical Mental Health Counseling from Johns Hopkins University.

---

The opinions and views of our guest contributors are shared to provide a broad perspective of eating disorders. These are not necessarily the views of Eating Disorder Hope, but an effort to offer a discussion of various issues by different concerned individuals.

We at Eating Disorder Hope understand that eating disorders result from a combination of environmental and genetic factors. If you or a loved one are suffering from an eating disorder, please know that there is hope for you, and seek immediate professional help.

Published on September 14, 2018.
Reviewed & Approved on September 14, 2018, by Jacquelyn Ekern MS, LPC

Published on EatingDisorderHope.com