“I Need Someone to Help Me Build Up My Strength”: A Meta-Synthesis of Lived Experience Perspectives on the Role and Value of a Dietitian in Eating Disorder Treatment
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design
2.2. Search Strategy
2.3. Study Selection
2.4. Quality Appraisal
2.5. Data Extraction, Translation, and Synthesis
2.6. Reflexivity
3. Results
3.1. Study Selection and Characteristics
3.2. Quality Appraisal
3.3. Translation and Synthesis
3.3.1. Theme 1: “Guidance and Structure”—Provision of Nutrition Knowledge and Skills
- Subtheme 1(a): Nutrition Education
“He [dietitian] was more balanced and helped me learn the difference between I guess (sic) healthy attitudes to wanting to eat well and exercise, versus the eating disorder thoughts wanting to be excessive with exercise and food restriction.”(P19) [29]
- Subtheme 1(b): Meal Planning and Monitoring
“I often log my diet and exercise when I wonder about the reason why I am feeling the way I do. Logging has also enabled me to identify patterns in my eating, the need to adjust my eating, and it prompted me to increase the total amount of food I consume.”(Chloe) [30]
“I count it... but 30 g of fat. If I added it to everything else in my diet, it’s like, an ordeal, it never was when I was growing up.”(p.81) [33]
“There was nothing that I could do to help him, so I needed somebody else to be in charge”(p.488) [27]
“I guess it was just having somebody else, who wasn’t me, to reiterate the message of what was important. I saw the dietitian as a bit of an ally for me, to help me help her”(P18) [29]
3.3.2. Theme 2: “Having All My Bases Covered”—Dietitians as Part of a Multidisciplinary Team
- Subtheme 2(a): Enhancing Care through a Combined Front
“I think a lot of times when I’m told something […] I immediately get defensive. I don’t fully believe what they tell me. So to have it kind of re-emphasized from another, it’s like having that third-party validation. So like having like them communicate, and the validation is more reassuring [especially] when you have a hard time trusting.”(Claire) [38]
“... especially when I was really down and out, obviously my brain wasn’t functioning 100%, and so I would forget sometimes to tell someone this. The coordinated care probably helped them [providers] as well … They can tell each other when I wasn’t able to tell them. I think that’s a really important part. And even now, I forget sometimes, “oh yeah I probably should have told you that, but I thought I already said it to someone else,” so the fact that I don’t have to repeat myself is a huge benefit.”(Isabel) [38]
“... It was difficult […] I was having to relay my blood results and my weight changes to both the psychologist and dietitian, which I mean it’s frustrating […] but also for an eating disorder patient I don’t think it’s the best idea for them to give me that capacity to lie”(P11) [29]
“Even though they both said that they would, I don’t think they ever made contact.”(Patient 6) [36]
- Subtheme 2(b): Challenges with Multidisciplinary Treatment
“my team that I have right now has given me the space to do that where it’s not this immediate reaction to things, everybody’s letting me test the waters and like figure out for myself, and I think that’s been helpful for me to just … develop some sort of competence that other people aren’t the ones to keep me afloat, that I’m actually doing it, which I think is hard early on in eating disorder treatment, because you do have so many people telling you how to do things, that one of the things that happened to me is that I sort of lost a sense of my own competence.”(Danielle) [38]
“I know that it is hard to get three or four hours each week to something that you don’t like. Not that I didn’t like, I mean, I love coming, but it’s just something that’s your enemy—to deal with it, you know. Instead of putting it behind and not dealing with it.”(p.147) [33]
“There was a point where […] the dietitian got cut because my [EDP], which is the eating disorder plan from the government was like, you’ve used your 20 sessions, so I had to pay full price, and I couldn’t afford that...”(P08) [29]
“The fact that … medical/nutritional/practical aspects were very well integrated into my psychotherapy was helpful.”(p.223) [25]
“Maybe the most helpful thing was the fact that it was just all together as one program.”(p.147) [33]
3.3.3. Theme 3: Challenges in Nutritional Treatment
- Subtheme 3(a): Challenges with Working with Ambivalence
“I really want to help you,” she says. Gosh, how to even begin to explain. I don’t want to eat, don’t want to get fat, food equals fat, I’m afraid you will manage to help me, do you understand, that’s the problem [...] Our goals are different: I want to lose weight and she wants me to get fat. I want a sense of triumph over hunger and my weight, and as far as I’m concerned, she wants me to become weak, she wants me to become someone who will have to eat.”(p.227) [24]
“[…] she will be disappointed in me and I will be disappointed in myself”(p.229) [24]
“I usually meet with the dietitian twice a week but this week I cancelled. I’m afraid that if I go she’ll ask me to eat in her office (like she did in the past when I couldn’t manage on my own). I want help but my cancellations and distancing myself aren’t letting anyone help me.”(p.229) [24]
- Subtheme 3(b): Varied Dietitian Knowledge and Skills in Working with EDs
“...I [started] actually trying to hit caloric minimums during the day. And, lo and behold, I started gaining weight... and my nutritionist was like, ‘Well, we need to start discussing your caloric intake, because you are gaining weight... we don’t want you to gain too much, and we’re concerned.’ And I felt so betrayed and so upset.”(Participant 19) [31]
“I think there are many dietitians out there who will happily fuel eating disorder behavior. I was just really, really lucky that I happened to end up with someone who was a HAES [Health At Every Size ®] professional and intuitive eating approach because had she not been, I feel like my restrictive behaviors would have exacerbated tenfold...”(P20) [29]
“...When I was my sickest...[my dietitian] was urging me to go to treatment...which was really validating... everyone else in my life...was telling me how amazing [I looked].”(Participant 8) [31]
“...Treatment providers [who] incorporated IE [Intuitive Eating] and HAES® [are] what led me to...full recovery.”(Participant 15) [31]
3.3.4. Theme 4: “It Was My Treatment and My Recovery”—Person-Centred Dietetic Care
- Subtheme 4(a): Building Trust and Connection
“She did not talk about weighing or about the meal plan. She only said that she wanted to know me better so that we could connect with each other. Until that moment I was sure that dietitians only looked at weight, BMI, and meal plans. I left the clinic with a better feeling, and I felt less worried.”(p.231) [24]
“She [dietitian] never made me feel like I was weird, or she never made me feel bad for anything that I was doing or thinking. She was compassionate, had an understanding of, and helped me understand why I was doing the things that I was doing.”(P17) [29]
“I entered the session with great fear. The dietitian looked at me and tried to understand why I was shivering. She gave me a glass of water. She closed the opened window. She offered me a hot beverage [...] Slowly, I was able to talk again.”(p.231) [24]
“I think that she definitely understands where you’re coming from and gives you her personal point of view, like, she gives you examples of what happened to her too. I think that really helps because you really are like, wow, at least somebody else feels like this.”(p.81) [33]
- Subtheme 4(b): Collaborative Care and Goal Setting
“I think the big thing for my experience was that it wasn’t until a dietitian actually asked me, ‘What’s important to you?’ or ‘What do you want to work towards?’ And my goal was, at that point, to stay out of hospital and she acknowledged that and was like, ‘Okay, well let’s work with that’.”(P08) [29]
“I had lots of input into what [my meal plan] was, but of course there were rules around it, [my dietitian] would say you need to have this much or pick one from this category and one from that category, to fulfill your calorie intake”(p.53) [28]
“she shows you choices of things...and I’d get to pick the things that I thought I could handle”(p.67) [28]
- Subtheme 4(c): Dietetic Treatment beyond Nutritional Focus
“I would see someone that has good experience, I wouldn’t see someone that doesn’t specialize because they wouldn’t understand the psychological component...”(P09) [29]
“I was afraid it was all going to be just food. Sit down and talk about diet. […] after meeting her I can tell you that it was much more of a personal thing. I was a person and there were more issues involved than just what my body needs. Your body is a machine and you need to give it fuel. I was afraid that someone wasn’t going to consider the fact that there were other issues involved.”(p.81) [33]
“[my dietitian] took some time to just sit and talk with me about what was upsetting me and so in a lot of ways she functioned a little bit like a therapist and a dietitian...for eating disorders that’s so important because the two [food and emotions] are interlinked, the stuff that is driving you to eat unhealthily are emotional things and the behaviors around the food trigger such an emotional response.”(p.53) [28]
“she’s not trained as a therapist but she was willing to do some of that because it is what I needed at that moment”(p.67) [28]
“I experienced an arena where I could expose my feelings completely, and it was like ripping off a bandage and healing the wound.”(p.512) [30]
“It was a difficult meeting. She had me eating. She was tough. On the other hand, she hugged me and encouraged me. I came out deciding that I was going to eat, even though it will be hard. [...] It’s far less than what I’m supposed to eat, but it’s a big and hard step.”(p.230) [24]
“My dietitian is really not used to working with girls like me—at least that’s how it seems from her behavior. There are many attempts at “How do you feel about gaining weight?” and “Try and gain some” or “But you’re going to try, ok?” It’s like ... tough when it shouldn’t be, but also soft when it shouldn’t be. It brings me back to the days [during my inpatient treatment] when the dietitian would yell at me if I lost 100 g or not gain anything. [...] What can I do? I need someone to help me build up my strength.”(p.230) [24]
3.3.5. Summary: The Cross-Cutting Theme of a Shared Treatment Journey
“it was the dietitian and I working as a team”(p.67) [28]
“She was really empathetic and validating of my existing experiences and was very clear about I’m the expert of my own body and experience and that she was kind of co-working with me, rather [than] directing my input so it was very collaborative.”(P20) [29]
4. Discussion
4.1. Summary of Evidence
4.2. Implications for Clinical Practice and Future Research
4.3. Strengths and Limitations
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
Appendix A
Words Relating to Eating Disorders | Search Term Used |
---|---|
Eating disorder | Eating disorder* |
Disordered eating | Disordered eating |
Anorexia nervosa | Anorexi* |
Anorexic | |
Bulimia nervosa | Bulimi* |
Binge eating disorder | Binge |
Binge eating | |
Feeding disorder | Feeding disorder* |
Orthorexia nervosa | Orthorexia |
Muscle dysmorphia | Muscle dysmorphia |
Rumination disorder* | Rumination disorder* |
Purging disorder* | Purging disorder* |
Night eating syndrome | Night eating syndrome |
Avoidant/restrictive food intake disorder | Intake disorder* |
ARFID | ARFID |
EDNOS | EDNOS |
OSFED | OSFED |
UFED | UFED |
PICA | PICA |
Words Relating to Dietitians | Search Term Used |
Dietitian | Dieti#ian |
Dietician | |
Dietetic | Dietetic* |
Nutritionist | Nutrition* |
Words Related to Role in Treatment | Search Term Used |
Treatment | Treatment* |
Counselling | Counsel* |
Counsel | |
Therapy | Therap* |
Therapies | |
Intervention | Intervention* |
Care | Care |
Consultation | Consult* |
Recommendation | Recommend* |
Plan | Plan |
Advice | Advice |
Management | Management |
Education | Educat* |
Prescription | Prescri* |
Support | Support |
Role | Role* |
Function | Function* |
Appendix B
Additional Reflexivity Statement
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Author (Year), Country | Study Aim (s) | Recruitment | Participants | ED Diagnosis (n) | Treatment | Data Collection | Method |
---|---|---|---|---|---|---|---|
Bakland (2019), Norway [30] | To explore important aspects of the patients’ own perceived benefits (or not) of the treatment as well as their experiences related to the various treatment components. | Treatment setting | Participants n = 15 %Female = 100 Age 19–42 years (mean NA) | BED (9) BN (6) | Setting: outpatient Physical exercise and dietary therapy (PED-t) conducted by physical exercise therapists and dietitians, with CBT. | Semi-structured interviews | Thematic analysis |
Blumenthal (2020), USA (Thesis) [31] | To discover how individuals with a history of (or current) AAN have experienced weight bias from nutrition providers during their illness, treatment, or recovery by describing their perceptions of the attitudes, treatment approaches, and phenotypes of the nutrition providers who treated them. | Community sources, online, treatment setting, snowballing | Participants n = 20 %Female = 85 %AFAB-NB = 10 %AMAB-F = 5 Age 22–74 years (mean 37.6) | AAN (20) | Setting: inpatient and outpatient Any treatment with a nutrition provider. | Semi-structured interviews, cross-sectional survey | Thematic analysis |
Bravender (2017), Switzerland [27] | To describe parent and patient impressions of inpatient medical stabilisation, both qualitatively through directed interviews, and quantitatively through parent and patient evaluation of specific components of an inpatient EDs medical stabilisation protocol. | Treatment setting | Patients n = 23 Parents n = 32 %Female = 81 %Male = 9 Gender/Sex parents NA Age patients 9–21 years (mean 14.9) Age parents NA | NA-patients were admitted under inpatient protein calorie malnutrition protocol | Setting: inpatient Medical stabilisation through nutritional refeeding. Clinicians involved included dietitians, massage therapists, nursing staff, patient care associates, and physicians. | Semi-structured interviews, cross-sectional survey | Descriptive theme identification |
Darden (2017), USA [28] | To investigate the patient’s perception of the facilitators and barriers to forming a therapeutic working alliance with the RDN during ED treatment. | Online | Participants n = 7 %Female = 100 Age 15–51 years (mean 26.6) | AN (4) BN (3) | Setting: inpatient and outpatient Had to have completed an ED treatment program and have had treatment from a dietitian. | Semi-structured interviews | Thematic analysis |
Elran-Barak (2022), Israel [24] | To explore the perspectives of women with an ED regarding their nutritional counselling. | All social media posts meeting the inclusion criteria were included. | Social network users: Study 1 n = 82; Study 2 n = 14 %Female = 100 Age NA | NA | Setting: NA Treatment involving nutritional treatment. | Posts made on a medical social network website | Phenomenological analysis Thematic analysis Content analysis |
Heafala (2022), Australia [29] | To explore perspectives on receiving dietetic care for EDs in a primary care setting. | E-newsletters, ED organisation websites | Participant with lived experience of ED n= 21 Carers of people with ED n = 3 %Female = 96 %Male = 4 Age 15–54 years (mean NA) | AN (12) AN and BN (3) OSFED (2) Changed over time (2) Primarily restrictive (2) | Setting: outpatient Participants had to have seen a dietitian in a primary setting. | Semi-structured interviews | Thematic analysis |
Lyons (2018), UK [32] | To explore the lived experiences of men who have, or have had, an ED in the form of anorexia or an atypical variant (EDNOS). | Online, ED charity volunteer database | Participants n = 7 %Male = 100 Age 23–34 years (mean 28.29) | AN (7) | Setting: inpatient and outpatient Varied dietitians/nutritionist, counselling, hypnotherapy, help lines and accident and Emergency NB. All men interviewed had sought treatment, all but one had received medical. | Narrative interview (with structured questions) | Narrative analysis |
Marek (1995), USA [33] | To evaluate an integrated treatment program for college women with eating problems. | Flyers, presentations, announcements, and newspaper advertisements | Participants n = 11 %Female = 100 Age 18–22 (mean NA) | AN (2) BN (6) | Setting: outpatient Bi-weekly dietitian appointments, bi-weekly family therapist appointments, weekly group therapy sessions by dietitian and therapist. | Semi-structured interviews, focus groups, field notes | Grounded theory |
Munro (2014), UK [25] | To describe the service model and present preliminary evidence that begins to answer if intensive community treatment can avoid or minimise the use of inpatient care, if treatment for severe AN can be delivered safely in the community and be acceptable to patients, and if it is cost-effective. | Treatment setting | Patients n = 33 Gender/Sex NA Age NA | AN (33) | Setting: outpatient Intensive therapy service involving schema therapy, dietetic treatment, meal support, social support, and medical monitoring. | Cross-sectional survey | NA |
Petry (2017), Brazil [34] | To comprehend how women in recovery from AN feel and think about their eating behaviour both during and after this ED experience. | ED service | Patients n = 3 %Female = 100 Age 21–24 years (mean 22.7) | AN (3) | Setting: outpatient Monthly individual psychological, nutritional, and psychiatric treatment + weekly group psychotherapy. | Semi-structured interviews | Phenomenological analysis |
Reyes-Rodriguez (2016), USA [35] | To examine the content of nutritional sessions that participants of PAS Project- “Promoviendo una Alimentación Saludable” (Promoting Healthy Eating Habits) received as part of a small pilot clinical trial for EDs. | Treatment setting | Participants n = 18 Dietitian * n = 1 %Female = 100 Age 18–50 years (mean 38.5) | BED (5) BN (6) EDNOS (7) | Setting: outpatient Up to three nutrition sessions with a dietitian. A flexible personalised approach (not manualised) used. | Qualitative analysis of the nutritional therapy session recordings | Grounded theory |
Roots (2009), UK [26] | To assess young persons’ and parents’ satisfaction with CAMHS outpatient, specialist outpatient and inpatient treatment received in a large randomised controlled trial. | ED service | Survey: Adolescents n = 160; Parents n = 150 Focus group: Adolescents and parents n = 21 Gender/Sex NA Age NA | AN (160) | Setting: inpatient and outpatient Inpatient admission, specialist outpatient therapy, and treatment as usual in the community. | Cross-sectional survey, focus groups | Thematic analysis Content analysis for part 1 |
Taylor (2021), USA [36] | To provide further insight into the unique challenges involved in healthcare collaboration when using technology. Second, to offer suggestions about designs that might better support, for all stakeholders, the collaborative nature of ED treatment. | ED recovery websites and social media groups | Patients n = 9 Clinicians * n = 10 %Female = 89 %Male = 11 Age 18–45 years (mean 28) | NA | Setting: NA Participants had to have been receiving treatment for at least 6 months. | Semi-structured interviews | Grounded theory |
Thompson (2007), USA [37] | To explore how women with BED perceive the value of social support in their recovery processes. | Community sources, ED service, clinicians from outpatient ED service | Patients n = 10 %Female = 100 Age 31–53 years (mean 40.7) | BED (10) | Setting: outpatient Minimum 1 year in individual therapy/counselling. | Semi-structured interviews, demographic questionnaires, field notes | Phenomenological analysis |
Woodruff (2020), USA [38] | To understand the patient experience of women receiving coordinated, multidisciplinary treatment for an ED in an outpatient setting, employing a qualitative methodological approach. | ED service | Patients n = 12 %Female = 100 Age 18–42 years (mean NA) | AN (7) BN (3) Unspecified ED (2) | Setting: outpatient Collaborative team consisting of one physician, one nurse practitioner, 6–8 therapists and dietitians. Weekly to less-than-monthly frequency depending on clinical needs and financial resources. | Semi-structured interviews | Grounded theory |
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Yang, Y.; Conti, J.; McMaster, C.M.; Piya, M.K.; Hay, P. “I Need Someone to Help Me Build Up My Strength”: A Meta-Synthesis of Lived Experience Perspectives on the Role and Value of a Dietitian in Eating Disorder Treatment. Behav. Sci. 2023, 13, 944. https://doi.org/10.3390/bs13110944
Yang Y, Conti J, McMaster CM, Piya MK, Hay P. “I Need Someone to Help Me Build Up My Strength”: A Meta-Synthesis of Lived Experience Perspectives on the Role and Value of a Dietitian in Eating Disorder Treatment. Behavioral Sciences. 2023; 13(11):944. https://doi.org/10.3390/bs13110944
Chicago/Turabian StyleYang, Yive, Janet Conti, Caitlin M. McMaster, Milan K. Piya, and Phillipa Hay. 2023. "“I Need Someone to Help Me Build Up My Strength”: A Meta-Synthesis of Lived Experience Perspectives on the Role and Value of a Dietitian in Eating Disorder Treatment" Behavioral Sciences 13, no. 11: 944. https://doi.org/10.3390/bs13110944
APA StyleYang, Y., Conti, J., McMaster, C. M., Piya, M. K., & Hay, P. (2023). “I Need Someone to Help Me Build Up My Strength”: A Meta-Synthesis of Lived Experience Perspectives on the Role and Value of a Dietitian in Eating Disorder Treatment. Behavioral Sciences, 13(11), 944. https://doi.org/10.3390/bs13110944