Issue 49 | Qualitative Evidence
About this resource
NEDC e-Bulletin
Issue 49
Editor’s Note:
Qualitative research on eating disorders is a growing field, with researchers particularly interested in how qualitative research methods can help us understand barriers to care, social relationships, treatment needs and recovery experiences. This month we explore the value of qualitative research in informing practice, give an overiew of the latest qualitative research on eating disorders and provide a snapshot of a qualitative study on recovery, currently in the recruitment phase.
Recently, the Butterfly Foundation, in collaboration with the Mental Health Commission of NSW, published a practical guide on recovery-orientated practice, ‘Insights in Recovery – A consumer-informed guide for health practitioners working with people with eating disorders’. We discuss the research informing the development of this guide and how health professionals can best use this resource to support client needs during recovery.
If you are interested in collaborating with the NEDC, we encourage you to join and become an NEDC member.
Contents:
The Latest Qualitative Research on Eating Disorders
Dr Lucie Ramjan is a Senior Lecturer in the School of Nursing and Midwifery at Western Sydney University. Her research interests include the therapeutic relationship and anorexia nervosa. She recently conducted two pilot studies with colleagues, to investigate the feasibility of mentoring support programs for individuals with eating disorders.
Value of Qualitative Research for Eating Disorders
Qualitative research makes a significant contribution to evidence-based practice (Green & Britten, 1998). It allows researchers to explore and appreciate human subjectivity, providing holistic insights and understanding of people’s experiences (Corbin & Strauss, 2015). Qualitative research is slowly gaining the recognition it deserves as a robust, rigorous research approach in mental health and as a way of “giving voice to participants” (Peters, 2010, p. 35) and addressing complex questions (Green & Britten, 1998; Peters, 2010). It has a broad scope of use in mental health research, from gaining deeper insights on phenomenon, to the development and testing of theory and interventions, to translation in practice (Peters, 2010). Qualitative approaches have been particularly apt in eating disorder research, empowering consumers and service-users through participation (Bell, 2003; Nicholls, Fogarty, Hay & Ramjan, 2016; Peters, 2010) and allowing experts to listen to unique stories. It can be better understood how interventions should be tailored in both treatment and recovery, if those with eating disorders are both the voice and expert, rather than their needs being interpreted by or through others.
Recent Qualitative Research
While qualitative research in eating disorders has explored a myriad of areas, two recent qualitative studies have explored the social relationships and networks of people with eating disorders prior to and during hospitalisation (Patel, Tchanturia & Harrison, 2016; Westwood, Lawrence, Fleming & Tchanturia, 2016).
Patel et al. (2016) invited 17 inpatients from a specialist ED service in the United Kingdom (UK) to take part in focus groups and individual interviews to explore social functioning among adolescents with eating disorders. They found that adolescents with eating disorders either reported no close friendships prior to admission or lost their connection with peers during treatment. Not knowing what to say affected the maintenance of relationships (Patel et al., 2016).
Adolescents also felt they lost a connection to the outside world as a consequence of long inpatient stays and ward programs heightening difficulties in maintaining contact with friends and peers. This created a feeling that “life’s going on without [them]”, their social networks were diminishing and they felt a sense of isolation on transition back to school. In the development of friendships, they described their fears and social anxiety, including judgement from others and social sensitivity which culminated in a fear of being rejected (Patel et al., 2016). An example of this phenomenon was reported by Westwood et al. (2016) who interviewed 10 adult inpatients with anorexia nervosa in a similar setting. This study revealed similar themes such as social concerns and anxiety, with fitting in, group exclusion and perceived judgement from others in relationships, which inhibited the initiation of friendships during their lives. Transition periods and hospitalisation were also times when these individuals felt disconnected with friends because of limited contact time. The illness had a detrimental impact on the development and maintenance of friendships (Westwood et al., 2016).
However, the studies (Patel et al., 2016; Westwood et al., 2016) demonstrated hospitalisation could also have a positive impact, in that trust and friendships could be developed with those in a similar situation or a stronger bond was developed with friends outside the service who were empathetic and supportive of their recovery. The adults spoke particularly highly of the positive qualities of their friends (Westwood et al., 2016). However, the adolescents in Patel’s study (Patel et al., 2016) did identify the negative impact of forming friendships within hospital as it also strengthened the hold they had on the eating disorder.
The benefits of studies like these are that stakeholders (young people with eating disorders and adults with anorexia nervosa) provide insights into service provision and their needs. The studies provide recommendations for stepped integration backed into the community, more contact with friends during hospitalisation (i.e. greater visitation from friends), the development of a repertoire of coping skills and avenues for current treatment approaches to support the development of these skills (Patel et al., 2016). While the sense of detachment from the outside world that patients feel in hospital and the positive effect friends can have on recovery is not a new concept (Ramjan & Gill, 2012), it is disconcerting that some inpatient treatment programs still remain reluctant to relax rules around visitation and friends, despite previous and more recent qualitative research supports the benefits.
Furthermore the voices of consumers and service-users resonate strongly in qualitative research on the importance of the therapeutic relationship (de la Rie et al., 2008; Gulliksen et al., 2012). During treatment, a therapeutic alliance with a clinician that has expertise, commitment and invests in them as an individual is important for treatment and recovery (Fogarty & Ramjan, 2016; Zaitsoff, Pullmer, Menna, & Geller, 2016). For adolescents in a recent study by Zaitsoff et al. (2016), the top two factors identified as being helpful were the alliance, and involvement and choice in treatment decisions. Fogarty and Ramjan (2016) found that adults with self-reported anorexia nervosa identified the importance of support from others, which included hope for recovery, feeling listened to and understood, and being empowered through involvement in decisions. Participants remarked: “Eating disorders are not just about the weight on the scale” and treatment needs to account for underlying factors (Fogarty & Ramjan, 2016). The importance of listening to consumers cannot be understated and qualitative research provides the avenue for consumers to have their say. These stories can be utilised by clinicians and treatment providers to reform inpatient care and service delivery in order to meet consumer needs.
Future Directions for Qualitative Research
There is a need for future qualitative research to focus on men and other eating disorders, as the focus has predominantly been on anorexia nervosa and women’s experiences. Future research can also look at alternative, innovative approaches, such as the benefits of mentoring (Fogarty, Ramjan & Hay, 2016) as a way forward in development and maintenance of friendships established during and post hospitalisation. Mentoring programs can have been shown to have positive benefits for both parties involved in the relationship. It can establish a sense of belonging for mentees and validate the progress mentors have made in their own recovery (Fogarty, Ramjan & Hay, 2016).
References:
Bell, L. (2003). What can we learn from consumer studies and qualitative research in the treatment of eating disorders? Eating and Weight Disorders, 8(3), 181-187.
Corbin, J. M., & Strauss, A. L. (2015). Basics of qualitative research: Techniques and procedures for developing grounded theory (4th edition). Sage: California.
de la Rie, S., Noordenbos, G., Donker, M., & van Furth, E. (2008). The Quality of Treatment of Eating Disorders: A Comparison of the Therapists’ and the Patients’ Perspective. International Journal of Eating Disorders, 41, 307–317.
Fogarty, S., & Ramjan, L. M. (2016). Factors impacting treatment and recovery in Anorexia Nervosa: qualitative findings from an online questionnaire. Journal of Eating Disorders, 4, 18.
Fogarty, S., Ramjan, L., & Hay, P. (2016). A systematic review and meta-synthesis of the effects and experience of mentoring in eating disorders and disordered eating. Eating Behaviors, 21, 66-75.
Green, J., & Britten, N. (1998). Qualitative research and evidence based medicine. BMJ, 316, 1230-2.
Gulliksen, K.S., Espeset, E.M.S., Nordbo, R.H.S., Skarderud, F., Geller, J., & Holte, A. (2012). Preferred Therapist Characteristics in Treatment of Anorexia Nervosa: The Patient’s Perspective. International Journal of Eating Disorders, 45, 932–941.
Nicholls, D., Fogarty, S., Hay, P., & Ramjan, L. M. (2016). Participatory action research for women with anorexia nervosa. Nurse Researcher, 23(5), 26-30.
Patel, K., Tchanturia, K., & Harrison, A. (2016). An exploration of social functioning in young people with eating disorders: A qualitative study. PLoS One, 11(7): e0159910.
Peters, S. (2010). Qualitative research methods in mental health. EBMH Notebook, 13(2), 35-40.
Ramjan, L.M., & Gill, B.I. (2012). An inpatient program for adolescents with anorexia experienced as a metaphoric prison. American Journal of Nursing, 112, 24–33.
Westwood, H., Lawrence, V., Fleming, C., & Tchanturia, K. (2016). Exploration of friendship experiences, before and after illness onset in females with anorexia nervosa: A qualitative study. PLoS One, 11(9): e0163528.
Zaitsoff, S., Pullmer, R., Menna, R., & Geller, J. (2016). A qualitative analysis of aspects of treatment that adolescents with anorexia identify as helpful. Psychiatry Research, 238, 251–256.
Insights in Recovery – A consumer-informed guide for health professionals
Extensive research has acknowledged recovery from an eating disorder as a complex process requiring a person-centred approach to treatment (Hay & Cho, 2013; Reynen, 2012; Hay et al., 2014; Musolino, 2016). A recent study found that 44% of people who had received treatment for eating disorders still met the diagnostic criteria for an eating disorder, 10 years later (Lannfelt et al., 2014). Additional research has shown that in combination with therapy, people with eating disorders identify a wider range of factors contributing to personal recovery, including personal relationships, meaningful activities and positive life experiences (Espindola & Blay, 2009; Hay & Cho, 2013; Reynen, 2012)In 2015, the Butterfly Foundation, in partnership with the Mental Health Commission NSW, conducted qualitative research into the recovery experiences of people with eating disorders to better understand their treatment needs and assist health practitioners working alongside clients.Insight from 104 Australians with a lived experience of an eating disorder was received through an online narrative survey and two small focus groups. Questions and discussions explored what motivated participants to engage in recovery, how they understand recovery in their lives and the professional responses they found helpful.A thematic analysis of participant responses identified important issues aiding recovery, including developing a sense of identity, experiencing personal agency in the recovery process, supportive relationships, choice and a sense of control, as well as confidence and hope. Participants particularly noted that it was important that they were seen as an individual person first, rather than feeling categorised by their illness.
A Unique Approach
The research also highlighted areas where recovery oriented approaches for people with eating disorders may require a different emphasis to treatment of other mental illnesses.Of particular note is the need for:
- Access to competent and compassionate care when it is needed.
- A focus on the thoughts associated with eating disorders rather than priority given to weight and appearance.
- Service settings and healthcare practices that promote feelings of safety to enable people to engage in the hard work of recovery.
A Guide for Health Practitioners
Findings from this research project have informed the development of a practical guide on recovery-orientated practice, ‘Insights in Recovery – A consumer-informed guide for health practitioners working with people with eating disorders’.The principles in this guide are intended to support health practitioners in their important role in assisting recovery from eating disorders. Insights in Recovery embodies the principles of ‘Living Well- A strategic plan for Mental Health in NSW 2014-2024’ and is a companion to the National Framework for Recovery Orientated Mental Health Services (2013). Health professionals are encouraged to refer to this guide to adopt a person-centred, recovery-orientated approach when working with patients experiencing an eating disorder.
Download the Guide
If you would like to read more about the research informing the Insights in Recovery Guide, an overview of the evidence has also been published.
If you are interested in finding out more about this project, please contact the Butterfly Foundation.
References
Espindola, C. R., & Blay, S. L. (2009). Anorexia nervosa treatment from the patient perspective: a metasynthesis of qualitative studies. Annals of Clinical Psychiatry, 21, 38-48.Hay, P., Chinn, D., Forbes, D., Madden, S., Newton, R., Sugenor, L., Touyz, S. & Ward, W. (2014). Royal Australian and New Zealand College of Psychiatrists clinical practice guidelines for the treatment of eating disorders. RANZCP. https://www.ranzcp.org/Files/Resources/Publications/CPG/Clinician/Eating-Disorders-CPG.aspxHay, P. J. & Cho, K. (2013). A Qualitative Exploration of Influences on the Process of Recovery from Personal Written Accounts of People with Anorexia Nervosa. Women & Health, 53, 730-740.Musolino, C., Warin, M., Wade, T., & Gilchrist, P. (2016). Developing shared understandings of recovery and care: a qualitative study of women with eating disorders who resist therapeutic care. Journal of Eating Disorders, 4.Reynen, E. (2012). Recovery from Bulimia: What Helps in Healing. Social Work Master’s Clinical Research Papers, 98.
Study Snapshot: Understanding recovery through qualitative research
We spoke with Capella Meurer about conducting qualitative research for eating disorders. Capella is a member of the NEDC and PhD candidate at Monash University, currently investigating the treatment of eating disorders and individual experiences of recovery. We asked Capella to provide insight into her research focus and qualitative study design.
Can you tell us a bit about your study and why you chose recovery as a focus?
When I finished my undergraduate degree, I was employed for nine months as a mental health worker on an eating disorders unit in the United States. Watching the patients there relapse so quickly, sometimes within a matter of weeks, made me wonder how this situation could be improved. Then, as I started to look at the literature in the early stages of devising my research question, I found that eating disorders had a relatively low prevalence (Hoek, 2006; Hudson, Hiripi, Pope, & Kessler, 2007; Keski-Rahkonen et al., 2008; Smink, van Hoeken, & Hoek, 2012; Wade, Bergin, & Tiggemann, 2006), but alarmingly high mortality (Arcelus, Mitchell, Wales, & Nielsen, 2011; Birmingham, Su, Hlynsky, Goldner, & Gao, 2005; Franko et al., 2013), which added weight and urgency to the concern I felt. This concern was essentially that people appeared to be experiencing several treatment difficulties when recovering from an eating disorder, along with high rates of relapse and risk involved. So, through my research I want to find ways that practitioners can improve outcomes to reduce relapse and improve the chance of recovery.
Recovery is a relatively broad scope for eating disorders. How are you conducting your study and what methods are you using to collect and analyse responses?
I am conducting two studies that focus on the experiences of those in recovery. Both studies are qualitative, as such research is becoming increasingly important in evaluating the effectiveness of treatment.
The first study involves an online focus group. The purpose of this focus group is to understand and compare experiences of recovery across Australia. I am also very interested in exploring the use of an online focus group for this population. Online focus groups have been used previously by Williams and Reid (2007; 2009) with some success. I believe that this method may be useful in encouraging the discussion of topics and themes that would not normally be discussed due to the anonymous nature of the medium. I discuss the safety measures in place for the online focus group below.
The second study involves a series of one-on-one interviews, which will be based in Melbourne. The findings from these interviews will be compared with the information gained in the online focus group and allow for additional analysis and insight. I will be analysing the data from both the focus group and the interviews using interpretive phenomenological analysis in order to understand personal experiences of recovery, particularly what has helped and hindered it. This understanding will add to existing literature about how treatment can be improved from the standpoint of those who undergo it (Arthur-Cameselle & Quatromoni, 2014; Pemberton & Fox, 2011; Savukoski, Uusiautti, & Määttä, 2013; Tierney, 2008; Vanderlinden, Buis, Pieters, & Probst, 2007; Westwood & Kendal, 2011).
What are some of the challenges you are facing in conducting qualitative research for eating disorders?
A major challenge faced when conducting this research has been ensuring participants meet the selection criteria for the study, whilst also minimising risk. While the majority of participants are identified as being in recovery according to the measures being used (self assessment, the Stages of Recovery Instrument (Andresen, Caputi, & Oades, 2006) and the Revised Suicide Behaviors Questionnaire (Osman, et al 2001)), some are also identified as being at risk for suicide. For these participants to be included in the study, further ethical clearance is required to conduct additional screening. What this indicates to me is that suicidal risk and thoughts may still be present through recovery from an eating disorder. This is supported by the recovery model, which encourages wellbeing and identity development over complete symptom cessation (Davidson & Roe, 2007; Slade et al., 2014).
For my research, however, it is crucial to balance risk associated with including participants who are at an increased risk for suicide in a study that is being conducted online. Because of this, I have safety measures around the online focus group. Firstly, participants are screened to ensure that they are suitable to participate (measures mentioned above). They are provided with the contact information for the Butterfly Foundation and Lifeline in the explanatory statement, during the actual group, and at the end of the group. Participants have to provide the researchers with a phone number that they can be contacted during the focus group should there be any concerns about their wellbeing. At the end of the focus group, records of these phone numbers are destroyed. Should there be any concern for a participant, they will be contacted, checked on, and asked to contact a support person or a helpline.
Have you had any significant findings so far?
Although this study is currently in the recruitment phase, I’ve already started to find some interesting results. As I discussed above, there appears to be a continuation of suicidal symptoms through recovery for some participants. This is something I wish to further examine within the online focus group and interviews, as appropriate. The response has also been impressive, with more people than expected being eager to participate. This level of interest highlights a need for such research and the desire for those with lived experience to share their story. I am hoping that this study will contribute to improved treatment approaches and a better understanding of eating disorders for clinicians and the community.
There seems to be an increase in qualitative research on eating disorders, why do you think this is?
I find the growth in qualitative research on eating disorders, and in general, very exciting. Similar to myself, it appears that researchers are noticing a gap in evidence that needs filling. Tanenbaum (2006) acknowledges that those using services are in a unique position to know what works, and hence their insight and feedback is needed. In relation to eating disorders, gaps in treatment needs and recovery experiences have been identified in previous research (Butterfly Foundation, 2016). Qualitative research works towards filling these identified gaps so that we, as practitioners and researchers, have a more comprehensive understanding of how to help those with eating disorders. This is both exciting and invigorating, as it indicates that we are on the cusp of change in the field.
If you are interested in participating in this study, please visit our Current Australian Studies page.
References
Andresen, R., Caputi, P., & Oades, L. (2006). Stages of recovery instrument: development of a measure of recovery from serious mental illness. Australian and New Zealand Journal of Psychiatry, 40(11-12), 972–980.
Arcelus, J., Mitchell, A. J., Wales, J., & Nielsen, S. (2011). Mortality Rates in Patients With Anorexia Nervosa and Other Eating Disorders. Archives of General Psychiatry, 6(7), 724–731.
Arthur-Cameselle, J. N., & Quatromoni, P. A. (2014). A Qualitative Analysis of Female Collegiate Athletes’ Eating Disorder Recovery Experiences. The Sport Psychologist, 28(4), 334–346.
Birmingham, C. L., Su, J., Hlynsky, J. A., Goldner, E. M., & Gao, M. (2005). The mortality rate from anorexia nervosa. International Journal of Eating Disorders, 38(2), 143–146.
Butterfly Foundation. (2016). Insights in Recovery: An overview of the research project informing the Insights in Recovery Guide. Sydney, Mental Health Commission NSW.
Davidson, L., & Roe, D. (2007). Recovery from versus recovery in serious mental illness: One strategy for lessening confusion plaguing recovery. Journal of Mental Health, 16(4), 459–470. http://doi.org/10.1080/09638230701482394.
Franko, D. L., Keshaviah, A., Eddy, K. T., Krishna, M., Davis, M. C., Keel, P. K., & Herzog, D. B. (2013). A longitudinal investigation of mortality in anorexia nervosa and bulimia nervosa. American Journal of Psychiatry, 170(8), 917–925.
Hoek, H. W. (2006). Incidence, prevalence and mortality of anorexia nervosa and other eating disorders. Current Opinion in Psychiatry, 19(4), 389–394.
Hudson, J. I., Hiripi, E., Pope, H. G., Jr., & Kessler, R. C. (2007). The Prevalence and Correlates of Eating Disorders in the National Comorbidity Survey Replication. Biological Psychiatry, 61(3), 348–358.
Keski-Rahkonen, A., Hoek, H. W., Linna, M. S., Raevouri, A., Sihvola, E., Bulik, C. M., et al. (2008). Incidence and outcomes of bulimia nervosa: a nationwide population-based study. Psychological Medicine, 39(05), 823–9.
Osman, A., Bagge, C. L., Gutierrez, P. M., Konick, L. C., Kopper, B. A., & Barrios, F. X. (2001). The suicidal behaviors questionnaire-revised (SBQ-R): Validation with clinical and nonclinical samples. Assessment, 8(4), 443–454.
Pemberton, K., & Fox, J. R. E. (2011). The Experience and Management of Emotions on an Inpatient Setting for People with Anorexia Nervosa: A Qualitative Study. Clinical Psychology & Psychotherapy, 20(3), 226–238.
Savukoski, M., Uusiautti, S., & Määttä, K. (2013). Ex-anorectic Patients’ Perceptions on Treatments: Less weighing, more talking. Addictive Disorders & Their Treatment, 12(2), 67–75.
Slade, M., Amering, M., Farkas, M., Hamilton, B., O'Hagan, M., Panther, G., et al. (2014). Uses and abuses of recovery: Implementing recovery-oriented practices in mental health systems. World Psychiatry, 13(1), 12–20.
Smink, F. R. E., van Hoeken, D., & Hoek, H. W. (2012). Epidemiology of Eating Disorders: Incidence, Prevalence and Mortality Rates. Current Psychiatry Reports, 14(4), 406–414.
Tanenbaum, S. J. (2006). The Role of “Evidence” in Recovery from Mental Illness. Health Care Analysis, 14(4), 195–201.
Tierney, S. (2008). The Individual Within a Condition: A Qualitative Study of Young People's Reflections on Being Treated for Anorexia Nervosa. Journal of the American Psychiatric Nurses Association, 13(6), 368–375.
Vanderlinden, J., Buis, H., Pieters, G., & Probst, M. (2007). Which elements in the treatment of eating disorders are necessary ‘ingredients’ in the recovery process?—A comparison between the patient‘s and therapist’s view. European Eating Disorders Review, 15(5), 357–365.
Wade, T. D., Bergin, J. L., & Tiggemann, M. (2006). Prevalence and Long-term Course of Lifetime Eating Disorders in an Adult Australian Twin Cohort. Australian and New Zealand Journal of Psychiatry, 40(2), 8–128.
Westwood, L. M., & Kendal, S. E. (2011). Adolescent client views towards the treatment of anorexia nervosa: a review of the literature. Journal of Psychiatric and Mental Health Nursing, 19(6), 500–508.
Williams, S., & Reid, M. (2007). A grounded theory approach to the phenomenon of pro-anorexia. Addiction Research & Theory, 15(2), 141–152.
Williams, S., & Reid, M. (2009). A grounded theory approach to the phenomenon of pro-anorexia. Addiction Research & Theory, 15(2), 141–152.
The Lived Experience Perspective
We asked Dr. Elysa Roberts, a valued member of the NEDC, to share her perspective on the value of qualitative research. Dr. Roberts is a Senior Lecturer in Occupational Therapy within the School of Health Sciences at University of Newcastle. Her research focuses on the relationship between sensory features and eating disorders and the recovery experiences of individuals with bulimia and anorexia.
When I learned the upcoming NEDC Bulletin would highlight qualitative research in the field of eating disorders I was thrilled. I was always drawn to disciplines that relied heavily on qualitative inquiry and methods in my studies; disciplines like anthropology and sociology. Occupational therapy also embraces a tradition of qualitative research. However, within the climate of evidence-based practice over the last two decades, studying the lived experience could sometimes mean traveling a long and lonely road. Therefore, it is exciting and reassuring to see the focus on the expanding research of the lived experience of those affected by eating disorders. This qualitative research trend suggests that within this truly multi-faceted field there are those who also value “a set of interpretative, material practices that make the world visible” (Denzin & Lincoln, 2011, p3).
Making the complex, idiosyncratic and nuanced world of those affected by eating disorders visible is no easy task. I know this because I’ve been the researcher eliciting the story from a participant and I’ve been the participant telling her story of a lived experience. The work to produce and publish a qualitative study requires art and science, compassion and neutrality, and faith and trust in the value of the in-depth view that the lived experience can offer.
Once shared through publication and/or presentation, the work is ours to read, discuss, reflect upon and apply the insights from the lived experience. The value of qualitative research is that it gives a voice to the lived experience whilst allowing for practitioners to gain deeper insight into the unique experiences and treatment needs of individuals. Such insight can later be applied to further improve the management of eating disorders.
References
Denzin, N. K., & Lincoln, Y. S. (2011). The Sage handbook of qualitative research. Sage.