Parents of children with eating disorders face an extraordinarily difficult challenge; the work that they put into caring for their loved ones cannot be discounted. This can be especially challenging in the face of a social environment that tends toward parent-blaming for disorders. Further, the kinds of behaviors caregivers are obliged to encourage in the individual with an eating disorder (for example, eating calorically-dense foods in order to gain weight) are frowned upon, to say the least, in our “anti-obesity” oriented society.
There is a rich body of literature exploring caregiver well-being, including studies suggesting that increasing the availability of support in various forms from social to practical may help caregivers to navigate a complicated path toward supporting a loved one with an eating disorder. Researchers are asking key questions around what we can do to better support parents and other caregivers.
Along these lines, Goodier et al. (2014) talked to parents who had participated in a skills-based training intervention. They were interested in finding out more about whether this intervention helped to bolster against the potential negative impacts of providing care for an individual with an eating disorder.
GIVING CARE
By all accounts, giving care in general is no easy task. A number of studies (e.g. Haigh & Treasure, 2003; Zabala, Macdonald & Treasure, 2009; Perkins et al., 2009 and many others) highlight the challenges that providing care for an individual with an eating disorder can pose. This experience can lead to negative mental and physical health outcomes, including anxiety, hopelessness, role confusion, and stress, among other impacts.
Family-based treatment (FBT) is one popular choice for treating children and adolescents with eating disorders. This form of treatment has a high degree of parent involvement, leveraging parents’ support in guiding the child or adolescent through recovery (to read more about FBT, see this, from F.E.A.S.T., and Tetyana’s post here). Though not without controversy (there was a lively debate at ICED about FBT), many parents have embraced this approach, which allows for deep family involvement in the process of eating disorder treatment.
In the family-involved treatment vein, the New Maudsley Method (based on Schmidt & Treasure’s “cognitive-interpersonal model”) focuses on how family processes, including but not limited to carer distress and expressed emotion, can impact the course of anorexia nervosa, and accordingly includes an element of caregiver training.
PARENT SKILLS TRAINING TREATMENT (PSTT)
The PSTT was designed by Treasure et al. (2007) and is delivered in workshop format. As Goodier et al. describe, parents prepare by reading 2 chapters from the “Skills Based Training for Carers of People with Eating Disorders” manual; these chapters focus on interpersonal relationships and communication. The workshop itself is two days long, adapted from a 14-hour group treatment designed for caregivers. It is designed to build skills, such as:
- Open questions
- Reflective listening
- Affirmations
- Summarizing
- Change talk
- “Rolling with resistance”
- Externalization
- Functional analysis
- Behaviour modification
- Boundary setting
- Problem solving
(These skills are listed on page 370 in the article, and I would imagine they are described in greater detail in the book, though I have not read the book)
These skills are taught through a combination of more traditional information-provision style teaching and interactive exercises, such as reflection and discussion, therapist skill modeling, and role-playing.
THE STUDY
To find out how participants responded to the treatment, Goodier et al. conducted semi-structured interviews with parents two weeks after the workshop.
11 caregivers participated:
- 6 mothers
- 1 step-mother
- 4 fathers
Caregivers ranged in age from 41-51, with a mean age of 44.5. Their children ranged in age from 11-14, with an average age of 13.3. 3 children had been diagnosed with AN-R, 3 with EDNOS (“AN-like”) and 2 EDNOS (unspecified). They had a relatively short illness duration, with an average of 5.8 months.
The researchers analyzed the interview data using thematic analysis, and two researchers coded the data separately and then compared results to bolster the rigour of the analysis.
THE MAIN RESULTS
Goodier et al. present their results around 3 main thematic areas:
- Intervention effectiveness and acceptability
- Interpersonal experience
- Feedback on content of intervention
Effectiveness and Acceptability
The parents in this study noted feelings of support and increased confidence stemming from the intervention; the authors note that parents used words like useful, helpful, beneficial, positive, and encouraging to describe their experiences in the workshop. Though some parents reported continuing difficulties following the workshop, parents also found that the intervention:
- Improved communication with their child
- Improved family dynamics
- Increased their feelings of efficacy (i.e. their sense of being able to manage the illness)
- Increased feelings of being able to cope
- Improved boundary-setting abilities
- Increased ability to externalize the eating disorder
The authors present quotes to illustrate each of these outcomes; I found this quote, relating to communication improvements, to be among the most compelling, as it speaks to a specific skill taught in the workshop and how a parent is using this in interaction with their child:
I find myself, particularly with the open-ended questioning…‘how do you feel about that etcetera’, that I’m using those sorts of statements more often right now and I think about my response before I say anything. So I’ve found it really helpful.
Interpersonal Experience
In speaking about the workshop itself, participants reported feeling supported within the group and so were able to discuss experiences that they had in common. Though the authors note that this was not a universal sentiment amongst group members, in general the workshop environment provided a safe space in which parents could openly share:
I think everyone was really open and frank. I think that really fostered that kind of atmosphere of sharing and caring for each other.
Feedback on Content of Intervention
Feedback on the actual content of the workshop was somewhat mixed. For example, while some parents perceived interactive activities to be enjoyable, others found that activities like role-plays provoked anxiety or uncertainty. Some suggested that there was too much theory and not enough about how to put theory into practice.
Parents were mixed in how they experienced the amount of content: some desired more detail, while others thought there was too much information. The following quote illustrates how the workshop might be experienced as partially helpful, particularly because what most parents are likely hoping for (what this parent described as “a miracle cure”) is not possible:
You’re still hoping you’re going to get a miracle cure, but yeah, it met expectations. It made me realise that education and understanding is everything you need, and it’s a long slow process of love and caring.
IMPLICATIONS
This study offers a first look at the use of a parent skills training program adapted from the New Maudsely Method. I’m always an advocate of talking to the people you are trying to reach, so I found it very encouraging that the researchers used a qualitative approach to get parents’ perspectives on the workshop.
Keeping in mind that you can’t please everyone (unfortunately!) it did seem as though parents were satisfied with the workshop. Encouragingly, the authors look to parents’ suggestions to modify future iterations of the workshop, for example by offering more opportunities to practice skills and integrating other members of the family, such as siblings. Parents also suggested that the workshop would be most effective early on in the child’s eating disorder, and that further developing the “safe space” for the workshop would enhance their ability to share openly and honestly.
I’m hopeful that this type of study also indicates movement toward increased engagement of parent perspectives in guiding family-based treatment, whether that is Maudsley or “New Maudsley”; if there was one thing that stood out to me in the debates around FBT at ICED, it was that parents want their voices heard and their opinions counted, especially in guiding forms of treatment that explicitly involve the family.
That being said, I think it is also important that, as both I and Tetyana have mentioned in prior posts, FBT/Maudsley/New Maudsley be presented as one treatment option among several… it bears repeating, as always that one size definitely does not fit all in eating disorder treatment! It might also be interesting to see whether a similar training workshop could help “chosen families” and other caregivers of individuals with eating disorders, or whether it could be adapted to fit the needs of those giving care to individuals with longer course disorders or to older individuals (i.e. beyond adolescence).
References
Goodier, G.H., McCormack, J., Egan, S.J., Watson, H.J., Hoiles, K.J., Todd, G., & Treasure, J.L. (2014). Parent skills training treatment for parents of children and adolescents with eating disorders: a qualitative study. The International Journal of Eating Disorders, 47 (4), 368-75 PMID: 24843891
Very interesting study. I love the idea and process of PSTT for parents/caregivers – this is something that has been lacking in the overall adolescent/child treatment model for years. Very encouraging in the focus of treating the ED as a symptom of overall dynamics in the child’s life instead of simply focusing on the ED behaviors/food/weight/etc.
However, I think there still needs to be caution and a balance in treating/conceptualizing parents and caregivers as always supportive of the person with an ED and implementing a treatment plan with the parent/caregiver as a main source of support. In my own experience as a preteen and teenager, especially the first year of my increased ED behaviors and entering into formal treatment (residential and outpatient), my parents (most particularly my mother) were a source of constant abuse and fueled my ED instead of recovery. My mother would paint a very different picture of our home life and her “support” of my recovery when she spoke with treatment providers and in our family sessions, but my reality consisted of physical, verbal, and emotional abuse for “ruining [her] life” with my eating disorder and being a “stupid, selfish b*tch.” Only one treatment provider eventually believed me about this and reported my mother to social services, but the case was dismissed after my mother’s usual lies. I know my case was somewhat unique in that my mother is a doctor (M.D. – Pediatrics), so treatment providers were biased to believe her accounts. But given the extent that family dynamics are tightly woven into the fabric of many adolescents’ and children’s EDs, I still think that caution and inquiring into all family members’ accounts of the family system is very important and necessary for effective recovery. I’m still struggling 16 years later after receiving “treatment” that focused on me as a “troubled teen acting out” instead of treating my ED and depression. Yes, I take responsibility for my ED behaviors and the continued struggle with achieving recovery this many years later, but I wish my earlier years had been very different.
Sorry for the very long post – I know this hits close to home for me!
I agree for sure about the need to tread lightly in determining who is the best source of support for the child/adolescent. While many parents are fantastic sources of support and wonderful advocates for their child with an eating disorder, this isn’t always the case. I’m sorry to hear about your negative experiences with treatment & family dynamics; there are so many power dynamics woven in there, with your mother being a doctor, as well. That can’t have been easy.
I think, as I briefly noted at the end of my post but strongly believe, that FBT should be one choice among several; it won’t work for everyone and it is so, so important to consider the individual with an eating disorder in their whole social context, including but not limited to family dynamics. I’m also curious about approaches that are similar to FBT but that include the main supporters in someone’s life in delivering treatment- with proper training and support for the caregiver as well, of course.
I agree totally that FBT shoild be offered as one option among several, but in an environment of limited resources where, practically speaking, the vast majorityof care given and time spent with will be by “family” in the wider sense rather than professional care I applaud initiatives like this to support and educate family members so that they can best support the sufferer in the however hundred minutes there are left between the fifty minutes a week (if you are lucky) with a professional
Absolutely, and that was certainly a reason I liked this study- it is so important to provide as many resources and as much support as possible to all involved. I like the “support the supporter” tone, as it is of course not easy to be involved in supporting someone through a difficult time, whatever that may be. As I’ve noted in a comment below, I actually think that this kind of support could be useful (in adapted forms, of course, based on treatment modality) across several types of treatment options. As you note, this is especially important when it can be hard to access intensive and continuing care/treatment from professionals (which is a whole other kettle of fish…).
Great study and I hope it gets a lot of recognition for showing the positives gained by empowering parents. My daughter’s treatment was at UCSD with an FBT Plus model. For me personally the parent’s processing group and the DBT skills-training (done with patients and carers) made a tremendous difference in my ability to support my daughter properly. There is nothing easy or intuitive about taking back control over the food and activities of an independent 17-year old, but it was necessary and it worked.
UCSD is all-in on supporting carers and I am now a member of the UCSD Parent Advisory Committee, a parent mentor for UCSD and also very active in the closed Facebook page Mothers Against Eating Disorders, a peer support group that provides support and information to mothers internationally. I think parents are way too important a piece of the support puzzle for them not to be included, empowered and properly trained.
Thanks for commenting! I’m happy to hear that you had such a positive experience with the support offered to you as a part of your daughter’s treatment. I was so encouraged that the study I looked at for this post incorporated the training element for parents- as you say, parents are a huge part of the process, and it may not always feel natural or intuitive to implement key elements of the FBT process, so it is so important to provide as much support and as many resources as possible to ensure that treatment goes smoothly for all involved.
I think that if you interchange the term ‘family’ and ‘carers’ it is helpful. Though the study was on parents…really, it seems to me to be about educating and supporting those who are providing caregiving support for children and adolescents diagnosed with eating disorders. It need not and may not be parents. However when you educate and support the caregiver, by turn, you support the sufferer.
We need to build circles of care around patients. Ensuring that those in the circle of care have tools to help them be as supportive and effective as possible can only help.
RIght to note that family care is not always indicated. However, in cases where it is…research on what works is so welcomed. Planning for the transition from IP or treatment home should always include increasing carer efficacy. Sufferers deserve effective support.
Good point; I think a similar workshop could be equally effective in training others working to support an individual with an eating disorder. I imagine there would need to be tweaks to fit the needs of various carers; i.e. a romantic partner vs. a parent might have different boundaries they would need to enforce, etc.- which reminds me of the work of Cynthia Bulik and her team on the UCAN (Uniting Couples in the Treatment of Anorexia Nervosa) initiative.
I completely agree that bolstering support systems is an extremely important enterprise. I think this is true irrespective of treatment type- even if the individual is engaged in another form of treatment than FBT for whatever reason. As the literature shows, a support system can really make a huge difference in the experience of individuals with eating disorders. Thanks for the comment!
I have been on one of these courses. The carers with me on my course included two wonderful brothers caring for their sisters, as well as parents, and I know that there have been romantic partners and other carers on other courses. As far as I am aware none of the families involved in “my” course were doing FBT at the time, although I myself had tried (and pretty much failed) with it in the past. The courses are suitable for a wide range of carers of people in a wide range of treatments, or none
Interesting! Do you know if it was this specific intervention (i.e. the “Parent Skills Training Treatment”) or something similar? I’m interested in learning more about what kind of similar approaches/interventions are out there. Did they use the same manual, or one that had content modified for use by other supporters who are not parents?
We used this manual, and one of the authors of the paper was our tutor.
The manual is not written specifically for parents, but for all carers, and earlier work was with all sorts of carers, mainly those caring for adults.
I think, having looked a bit closer at this paper, one of the points being researched was whether this “Skills Based” intervention is adaptable and acceptable to parents of adolescents probably more likely to be undergoing Family Based Treatment and to have more direct involvement in the management of eating etc, than those caring for adults in a variety of treatment settings, including inpatient where, by definition, the patient is not living with the carer 24/7 at the time of treatment.
While to some it might seem obvious that they would be, actually there are significant differences between “The Maudsley Method” (i.e. Family Based Treatment as manualised by Lock and LeGrange in their Treatment Manual for Anorexia-Nervosa) and the “New Maudsley” methods introduced by Janet Treasure and her team. I think this study was, in part, designed to prove their compatibility, but the Skills in Skills Based Learning are compatible with other treatment methodologies too.
Thanks for providing some insight; it’s good to hear that the manual is adaptable for various types of carers. Good point, too, about the differences between “Maudsley”/manualized FBT from Lock & LeGrange and the “New Maudsley” by Treasure et al., as you say, I don’t know that everyone (myself included) is clear on all of the differences. I’m wondering if it might be worth writing a post that illustrates some of the differences- I will read up and get on it! I am far from an expert on the topic so I am always happy to hear from others with insight like yours.
There was a really good debate/webchat between Gill Todd and an Australian on the similarities and differences between the two methods, that was on this site http://cedd.org.au/ I can’t find it any more but will keep looking, as the interpretation of “the M word” is a bit of an obsession of mine – Laura Collins blogged about it in 2011 and some of the comments made then are still relevant http://www.laurassoapbox.net/2011/01/two-maudsleys-mutually-exclusive-or.html
Thanks for sharing the links- I will check them out!
Over the eight years since my daughter’s depression and AN diagnosis I have been on a few different ‘Carers of a Loved One’ type courses but all based around the PSTT model you describe here. Within a year of my daughter’s first diagnosis I was sent a DVD and worksheets in order that I could learn from home – I’ve not heard of this being continued but it was marginally helpful at the time, for a ‘beginner’. Being in a group with others is far more helpful, though, as you compare stories and learn together, practicing the reflective listening, open questions etc.
The only FBT we had was at St George’s Hospital in London. From what I understanding, I don’t think it’s anything like the FBT offered in the US. For us it was very unhelpful, but maybe it was just that particular model.
Most of the PSTT courses were helpful in a limited way and I felt, from my personal experience, that although they were helpful, they were not enough. But that was all I was offered! What I WISH had been provided was DBT training that I hear is available at UCSD. I recognise that some of the aspects of the PSTT course incorporated a tiny component of DBT, but it was not enough for me and my daughter. Of course, everyone’s needs are different!
By far the best PSTT course I went on was three years ago when my daughter was under the care of Janet Treasure in The Royal Bethlem Hospital in London. That was a 3-day course and was excellent. Sadly, by then, my daughter was 19 and considered an adult (yet without the cognitive abilities of an adult because, of course, the AN stunted her maturity rate), and was VERY resistant to my help and support. Sadly, even being under Janet Treasure’s care didn’t help her. She is still struggling to this day. She’s moved away from me but I still use the skills I learned on this course when I’m with her.
These courses should also be offered to the mental health teams who care for adult sufferers in the UK. There were definitely boyfriends, husbands etc as well as parents on every course I went on, but no ‘professional’ carers. Maybe that’s a sign of how badly resourced the mental health care is here in the UK. It’s very obvious to me that none of the ‘non-specialist’ carers who spend time with my daughter have had any training in ED, which IMO doesn’t help her recovery rate.
Thanks for an interesting article and apologies for the length of this comment!
Please don’t apologize for the length of the comment- I appreciate that you took the time to write such a detailed comment! It’s interesting to hear about your diverse experiences with carer courses; I think it shows how varied these experiences can be.
Your comment makes me think that it would be interesting to see how parents receive training associated with other types of treatment, like DBT. I suspect (as with most other things…) that it would really vary based on the parent’s interest and the child’s stage.
This also brings me to the difficulty that you mention around the fact that even when the parent training is strong and there is lots of support, the individual with an eating disorder might still struggle. Hopefully one of the things the training does is emphasize that you as a parent have still done everything you can to support your child, and none of the continued struggle is at all your fault (again, I would assume it does but have not taken such a training myself!).
I agree that enhanced eating-disorder-specific training for non-specialist professional carers would be a step in the right direction- we shouldn’t assume they know how to provide care for individuals with eating disorders just by being in the health/mental health care field.