Content uploaded by Chiara Paganini
Author content
All content in this area was uploaded by Chiara Paganini on Mar 05, 2021
Content may be subject to copyright.
The experience of adults
recovering from an eating disorder
in professionally-led
support groups
Archana Waller, Chiara Paganini, Katrina Andrews and Vicki Hutton
Australian College of Applied Psychology, Melbourne, Australia
Abstract
Purpose –The aim of the study is to explore the experience of eating disorder support group participants. The
research question is “What is the experience of adults recovering from an eating disorder in a professionally-led
monthly support group?”
Design/methodology/approach –This qualitative study explored the experience of adults recovering from
an eating disorder in a professionally-led monthly support group. Participants were 18 adults recovering from
an eating disorder who attended a monthly support group. The data were collected using an online anonymous
survey and then analysed using a thematic analysis.
Findings –The main themes that emerged were: (1) sharing the pain and promise, (2) cautions and concerns
and (3) facilitators have influence. The findings indicate that the support group provided a safe space to share
their lived experience, that it reduced stigma and isolation, and improved participants’motivation and
engagement. Moreover, the results revealed some challenges to the functioning of the group. These included
management of discussions and dominant members, need for psycho-educational information and managing
intense feelings, relating to body-related comparison and other mental disorder comorbidities.
Originality/value –This is the first study highlighting the valuable role of the facilitator in balancing content
with compassion, in ensuring safety in the group, and potentially fulfilling a valuable education function in
supporting participants in their eating disorder recovery journey.
Keywords Eating disorder, Thematic analysis, Group therapy
Paper type Research paper
Eating disorders are serious and complex neuropsychiatric disorders that are often
pervasive and persistent. They are typically classified by problems associated with
restrictive eating, bingeing and/or purging behaviours and the overevaluation of weight and
shape and their control (Treasure et al., 2009). High levels of psychological distress, an
increased risk of suicide and risks of long-term medical complications are often experienced
by people with eating disorders (Barlow, 2014).
The three commonly recognised eating disorders are anorexia nervosa, bulimia nervosa
and binge eating disorder (American Psychiatric Association, 2013). Two residual categories
include: “other specified feeding or eating disorder”and “unspecified feeding or eating
disorder”(Barlow, 2014). To be diagnosed with anorexia nervosa, three features need to be
present: the overevaluation of shape and weight; a strong desire to be thin and intense fear of
weight gain and the active maintenance of an unduly low body weight (American Psychiatric
Association, 2013).
The diagnosis of bulimia nervosa includes three features: the overevaluation of shape and
weight; recurrent binge eating and extreme weight control behaviour which includes
compensatory behaviours (American Psychiatric Association, 2013). Binge eating disorder is
characterised by recurrent binge eating and absence of extreme weight control behaviour
(American Psychiatric Association, 2013). The two residual categories have no diagnostic
criteria (Barlow, 2014).
For Australians aged 15 and over, the prevalence of eating disorders is approximately
4–16% of the population (Hay et al., 2017). In Australia, research indicates that the most
prevalent eating disorders are binge eating disorder and other specified feeding or eating
Experience of
eating disorder
support group
The current issue and full text archive of this journal is available on Emerald Insight at:
https://www.emerald.com/insight/1443-9883.htm
Received 29 July 2020
Revised 16 September 2020
Accepted 17 October 2020
Qualitative Research Journal
© Emerald Publishing Limited
1443-9883
DOI 10.1108/QRJ-07-2020-0088
disorder (Hay et al., 2017). Eating disorders are amongst the highest mortality rates of all
psychiatric disorders, including a high risk of suicide (Arcelus et al., 2011). The Australian
Institute of Health and Welfare (2018) ranks eating disorders as the 10th leading cause of non-
fatal disease burden for females aged 15–44, and it is estimated that it costs the health system
close to $100m.
The treatment of eating disorders is complex and expensive. Lack of access to care, the
high relapse rate, fear of stigmatisation, the ambivalence experienced by the sufferers’
towards wanting change and unaffordable treatment can impede the sufferers’access to care
(Linville et al., 2012). Moreover, people living with eating disorders can often withdraw from
their social networks which can compound the eating disorder symptoms resulting in further
isolation (Treasure et al., 2009).
Recovery from an eating disorder is a long-term process that requires a range of
healthcare settings to support the sufferer in their recovery journey (Butterfly Foundation,
2019). Mitchison et al. (2012) note that despite the steady rise in incidence, in any given year,
only 5%–15% of people receive any treatment for their eating disorders. Due to the isolating
nature of the disorder, social support is viewed as an integral part of the recovery process for
people living with an eating disorder (Linville et al., 2012).
Over the years, to respond to the gaps in treatment services and to establish, foster and
reinforce social networks, support groups are being initiated and established to become a
valuable component of healthcare (Mancini et al., 2013;Worrall et al., 2018). Support groups
are defined as meeting “for the purpose of giving emotional support and information to
persons with a common problem”(Kurtz, 1997, p. 4). They often incorporate a range of group
types and functions such as, peer-support groups, self-help groups and professionally-led
groups (Stevinson et al., 2010).
In particular, interventions aimed at providing emotional support for people with eating
disorders include professionally-led and peer-led (self-help) support groups. Both have the
aim of fostering support for participants through the sharing of mutual experiences, but they
differ in terms of the nature of leadership or facilitation. Professional support groups are
supervised by individuals with advanced training in the health or social sciences (e.g. nurses,
social workers and mental health specialists), usually as a part of their occupational role. Peer
support programmes are run by fellow patients (or sometimes a family member), usually on a
voluntary basis (Stevenson et al., 2010).
Of particular interest to this study is the professionally-led support group. Professionally-
led support groups are groups that are led by a professional or agency-based facilitator
(American Psychology Association, 2018). They involve sharing experiences, and through
the facilitation of a trained worker, feedback is provided to assist in bringing about greater
awareness and personal change (Stevinson et al., 2010).
The degree of facilitator involvement in a group varies and the problems of members are
often not shared by the facilitator (Stevinson et al., 2010). For instance, some adopt a highly
structured leadership role where the focus is education and knowledge, whilst others take a
more non-directive approach which involves sharing of experiences and providing mutual
support, yet others combine psycho-education and mutual support (Stevinson et al., 2010).
Research on the effectiveness of support groups for people with mental illness indicate
that support groups can be a significant adjunct in supporting people with mental illness
(Worrall et al., 2018). The studies indicate that support groups for people with lived
experience of mental illness have positive and effective outcomes, such as improvements of
self-efficacy, enhancing coping skills, self-esteem and social support and reduction of
psychiatric symptoms (Mancini et al., 2013;Worrall et al., 2018). Studies have further
demonstrated that people attending support groups have increased knowledge of mental
illness and mental health services which resulted in improving morale (Pasold et al., 2010).
QRJ
Whilst there are a growing number of studies on the effectiveness of support groups in
providing positive improvements to well-being of participants, only a limited number of
studies were found that evaluate the effects of professionally-led support groups on people
with eating disorders. The studies, which include online eating disorder support groups,
suggest that the support groups provide a platform for peer support for recovery and relapse
prevention and a safe space to share, offer mentorship and friendship and reduce
participants’feelings of isolation (Kendal et al., 2017a;McCormack and Coulson, 2009).
Additionally, the studies documented the positive role of professional facilitator in promoting
trust and a sense of safety in the group, and in providing vital psycho-educational
information and support to the participants (Lefley, 2009).
Currently, in Australia, in the area of eating disorders, there is a lack of studies on
examining participants’evaluation of professionally-led support group experiences. Many
people with chronic mental illnesses attend support groups to cope better with the
psychological, emotional and social challenges their illness presents (Worrall, 2018).
Understanding the perspectives of participants in support groups may yield important
insights into the needs of the support group participants and could improve their experience
of the group. Moreover, studies indicate that support group facilitators can play a vital role in
determining the success of a group (Worrall, 2018). Thus, the aim of the study is to explore the
experience of eating disorder support group participants. The research question is “What are
the experiences of adults recovering from an eating disorder in a professionally-led monthly
support group?”
1. Setting
A not-for-profit eating disorder organisation that provides a monthly support group to adults
recovering from an eating disorder was approached for this study. People with all
presentations of eating disorders were able to access the monthly support group. The group
was an open group, and it was facilitated by two counsellors from the eating disorder service.
2. Methods
2.1 Design
A thematic approach was used for analysis (Braun and Clarke, 2008), with the focus of
identifying the key concepts present within participants’contributions. Initially, the author
read material and made notes about the main issues they felt were present in the data. They
then met to discuss their views and to develop a coding scheme, after which the first author
coded each contribution, storing data on the qualitative computer program ATLAS.ti to
facilitate with managing and retrieving information. The authors met once again to discuss
the codes and to collapse them into categories presented in this paper.
2.2 Participants
The study employed a purposive sampling technique which involves selecting individuals or
groups of individuals that have a shared characteristic or a set of characteristics (Palinkas
et al., 2015). This technique was chosen as the research question that is being addressed is
specific to the characteristics of a particular interest group (people with eating disorders in a
support group). Adults, 18 years and over, having self-reported an eating disorder and who
had attended a monthly support group were recruited. In total, 16 participants completed the
online survey. They were 18 years and over, and all were females. The 18 group members
who took part in the research had lived with an eating disorder for between 2 and 30 years.
In particular, 44% of the participants had an eating disorder between 0 and 10 years, 44%
between 10 and 20 years and 12% over 20 years. Half of the participants attended the support
Experience of
eating disorder
support group
group for more than 10 sessions, while the other half less than 10 sessions. The participants
have heard about the support group mainly through GP/psychologist referrals, Internet
database, National Eating Disorder Collaboration (NEDC) and Butterfly Foundation.
3. Materials
Participants completed an anonymous survey questionnaire which was created using Google
Forms, an online survey tool. Online surveys have been known to obtain higher response
rates on sensitive questions (McCabe, 2004). Therefore, to ensure complete anonymity and
confidentiality and to promote disclosure of sensitive and stigmatising information, an
anonymous open-ended survey was deemed suitable. Four demographic and nine open-
ended questions were deemed suitable to address two main areas: to encourage responses on
individuals’personal experience of the support group and to elicit response about their
experience of the professional facilitator (Vossler and Moller, 2015). Questions included,
“What were your main reasons for attending the support group?”and “What was your
experience of the facilitator? Please elaborate.”and a follow up question, “Any additional
suggestions/comments or statements?”to add more depth and understanding of their
experiences. Appendix 1 lists the open-ended questions.
3.1 Ethical considerations
All participants were treated in accordance with the Human Research Ethics Committee
(HREC) board of the institution in which ethics was approved.
3.1.1 Procedure. Participants were recruited using the database of one eating disorder
service. A recruitment email explaining the research and its expectations were sent to
participants who had attended the support group by the eating disorder service manager.
The email included a participation information sheet, a service sheet and a debriefing sheet.
The recruitment email had a link to the survey. Participation was voluntary. In completing
the survey consent was implied which was explained in the email. At any point until
submission, participants could withdraw by simply closing the browser. At the end of the
survey, participants were again notified that they could still withdraw at that point, both
options were stated in the participant information sheet and the email. Data were stored on a
secure server, which only the researcher had access to. The data collected was non-
identifiable.
3.1.2 Data analysis. Thematic analysis (TA), a method which is known for its flexibility, in
that it does not offer theoretically informed frameworks for conducting a research, was
adopted for “identifying, analysing and reporting patterns (themes) within data”(Braun and
Clarke, 2008, p. 79). The six phases of TA, proposed by Braun and Clarke (2008), which
include familiarising yourself with your data; generating initial codes; searching for themes;
reviewing themes; defining and naming themes and producing the report, were used to
identify themes or patterns within the data in an inductive way and is therefore strongly
linked to the data themselves. The aim was to stay close to how participants make sense of
their experiences and any resulting phenomena that emerge which TA allowed this study to
achieve.
3.1.3 Bracketing. The researcher works at the eating disorder service where the
participants were recruited. Therefore, to mitigate any potential harmful effects of the
researcher’s unacknowledged pre-conceptions related to the study, a reflexive journal and
regular supervisor debriefings were utilised across all stages of the study (Palaganas et al.
2017;Tufford and Newman 2010). Aspects that were explored using the reflexive journal
include researcher’s reason for undertaking the research; potential role conflicts with
QRJ
research participants; managing participant emotions; question and material selection and
analysis process.
4. Results
Braun and Clark’s (2008) framework for thematic analysis was adopted to explore the
experiences of people with eating disorders in a professionally-led monthly support group.
The thematic analysis of the survey data resulted in three main themes: (1) sharing the pain
and the promise, (2) cautions and concerns and (3) facilitators have influence.
4.1 Theme 1: sharing the pain and the promise
The pain of sharing the struggles of living with an eating disorder and the promise of the
group in providing safety, hope and motivation is explored in this theme. The support group
participants mostly reported positive experiences. For most participants the support group
provided a space to be with like-minded people, to share experiences, struggles and emotions
relating to their eating disorder recovery and to feel validated. In addition to sharing the pains
and struggles of recovery, some participants reported that the support group provided a safe
space that reduced isolation and increased connection. Moreover, for some participants the
support group provided hope and motivation to continue in their recovery journey. The sub-
categories of collective illness identity, sense of safety and connection and hope and
motivation explores this theme further.
4.1.1 Collective illness identity. This sub-theme explores the participants’sense of
belonging to the group. By being able to communicate with others who “actually understand”
(Participant 10) there was a sense of “we-ness”and the formation of a collective illness
identity (Barker, 2002). One such account of the collective experience is evident in the
following excerpt:
I think it is more the fact that everyone understands and can hugely relate to each other’s journey/
struggle/story in some way, shape or form that you know “professionals”, family etc do not or
cannot. (Participant 2).
Some participants reported communicating and listening to the shared experience in the
support group provided opportunities to explore their own behaviours and beliefs relating to
their eating disorder. Whilst for others the shared experience of participants in the support
group provided validation, as explained by one participant:
Talking about things with people who actually understand .... makes me feel understood.
(Participant 10)
4.1.2 “To feel less alone”.Many participants reported feelings of isolation and loneliness.
“To feel less alone”(Participants 1; 6; 8 and 9) was a recurrent reason to attend support
groups in many participants. Participants expressed that the support group provided a safe
space to connect socially and it reminded them that they are not alone in their experience.The
support group appears to be a trusted environment for participants to discuss issues about
isolation, stigma and shame. As one participant reported:
A lot of sufferers obviously are and feel very isolated with the illness, so this group also gives them
an avenue to be socially interactive or be more open to speak publicly and with no shame or
judgement attached. (Participant 2)
Whilst another participant stated that the support group was
My safe place and my self-care while I was sick. (Participant 12)
Experience of
eating disorder
support group
4.1.3 Instils hope and motivation. Along with sharing experiences, some participants
reported benefitting from listening to past participants recovery progress which they
reported helped them to facilitate and provide motivation towards their own recovery
journey:
It’s good to see some of the people returning each month and hearing their progress and learning new
skills that help them that I can implement. (Participant 7)
Consequently, in addition to feeling motivated, the participants saw themselves as having the
desire to help others as poignantly stated by one participant:
It reminds me of how detrimental eating disorders can be, especially when witnessing the physical
side effects of it in people at a support group. It reminds me that I am so lucky and proud of where I
am in my recovery and need to keep going so, I can help others and beat this awful illness.
(Participant 15)
Moreover, participants reported that the support group helped them to track their progress
and to hold themselves accountable as illustrated below:
I wanted something to help me keep on track. (Participant 11)
To hold myself accountable, to remember why I need to recover from my ED, to seek inspiration.
(Participant 15)
4.2 Theme 2: cautions and concerns
Participants also reported about unpleasant experiences in the support group. The themes
that explore the adverse effects participants experienced in the support groups are best
represented in two sub-themes: internal experiences and group dynamics and processes.
4.2.1 Internal experiences. This sub-theme explores the participants’concerns in attending
the face-to-face support group. The concerns relate to participants’internal experiences in
relation to managing uncomfortable feelings and thoughts, such as feeling triggered when
looking at other participants and feeling shy or intimidated. Some participants mentioned
finding difficulty in speaking in front of the group due to their social phobia and shyness:
It can be a little bit intimidating because of my social anxiety, but this is not a problem with the
group–so much as it was just an issue for me. (Participant 1)
Yet other participants mentioned, feeling “triggered by some of the bodies of other
participants”(Participant 16). Similarly, discomfort around body-related social comparison
was expressed by another participant:
Comparing myself to others, being bigger than them now.... dealing with the fact there are others
smaller than me. (Participant 9).
4.2.2 Group dynamics and processes. This sub-theme explores the concerns and challenges
the participants experienced in the group around managing talk time and content, and their
experience of dominant members. One participant seemed to be impacted by the
monopolisation of group discussions by some group members:
People who talk a lot and do not let others talk (Participant 6)
Whilst another participant reported her negative experience of group members discussing
themes not related to the group:
Sometimes people talk too much about irrelevant things. (Participant 8)
QRJ
Moreover, challenges of having an open group were highlighted by one participant who
stated:
Also when new people start the groups when others have been coming for a while, there tends to be a
lot of repetition of conversations and that is also understandable and fine because they are new to the
group but also means return people do not get as much out of the sessions as the conversations do not
move on from introductions of stories etc. (Participant 2)
Such group dynamic and process concerns relating to repetition of conversations and issues
around dominant group members may lead to boredom or disengagement in group
discussions which could result in participants not returning to the group (Ussher et al., 2008).
Finally, participants were keen to learn new perspectives and to have more variety in
group discussions that they felt the support group was not providing thus highlighting their
need for psycho-educational support and information, as illustrated below:
Talking about existing problems only–would be nice if there were times that we were challenged to
think differently and learn different things about recovery. Like a mini lesson/topic (Participant 3)
4.3 Theme 3: facilitators have influence
This theme summarises the participants’experience of the facilitators. Most participants
reported receiving positive emotional support from them. Participants reported about the
facilitators’role in moderating discussions helped to bring about safety and trust in the
group. The participants’experience of the facilitators is categorized into two interrelated sub-
themes: assertive compassion and safety.
4.3.1 Assertive compassion. Many participants felt that the facilitators helped to steer
conversations in the right direction by being assertive in their role while also being
compassionate in their approach. This balance between providing structure and flow with
warmth and compassion seemed to be appreciated by many participants, as illustrated below:
Really good. They are always warm and kind and do a good job of keeping the conversation on track
and away from triggering language. (Participant 9)
Very friendly and accessible, they moderate the conversation and ensure no triggering things are
discussed. (Participant 7)
Facilitator is amazing. She’s calm, measured, assertive when she needs to be. (Participant 15)
4.3.2 Safety. From the participants’statements, it was evident that they trusted the
facilitators in maintaining safety in the group. For some participants, the sense of safety
stemmed from the facilitators ability to moderate the discussions, as one participant
described,
She’s lovely, prompts everyone in the room to share if they would like to and steers in the right
direction that is safe for everyone. (Participant 3)
For others, it was the facilitators’compassionate approach that made them feel comfortable
to share,
They are fantastic very understanding non-judgmental and helpful. Always willing to listen.
(Participant 14)
She is always willing to talk about what others want to discuss but keeping the environment safe and
confidential to the room participants. (Participant 2)
From the participants’accounts, it seemed likely that the qualities of the facilitators that
resonated most with them were the facilitators assertive yet compassionate approach which
created a safe space for participants to share their experiences in the group.
Experience of
eating disorder
support group
5. Discussion
Research on the effectiveness of support groups on people with eating disorders suggest that
the support groups provide a platform for peer support for recovery and relapse prevention
and a safe space to share, offer mentorship and friendship and reduce participants’feelings of
isolation (Kendal et al., 2017a;McCormack and Coulson, 2009). The study aimed to explore the
experience of adults with eating disorders in a professionally-led monthly support group.
Results indicated an overarching acknowledgement from the participants that support
groups provide a safe space for them to share their lived experience and reduce stigma and
isolation. These findings are consistent with previous studies that confirm that eating
disorder support groups help in reducing social isolation and in providing a safe space to
share (Kendal et al., 2017a;McCormack and Coulson, 2009). The findings also suggest that the
support group improved participants’motivation and engagement which is also in line with
previous studies on the effectiveness of support groups on people with mental illness
(Worrall, 2018).
One of the prominent themes that participants experienced in the support group was the
sense of “we-ness”, which Barker (2002) terms as collective illness identity, a concept
constructed through shared experiential knowledge and narrative accounts. “We-ness”is
also understood as group cohesiveness which has strong correlations with empathy, self-
disclosure, acceptance and trust (Dyaram and Kamalanabhan, 2005). In his theory, Yalom
(1995, p. 107) describes cohesiveness as an agent of change in members and argues that it
alters personal self-esteem through acceptance and empathy from the group. Participants
mentioned feeling validated and feeling safe to share their struggles with others who
“actually”understand. This finding suggests that the support group provided an opportunity
for the participants to gain trust, support and reassurance from others experiencing the same
problem and therefore seems likely that the support group provided a safe space for
participants to share their lived experience. This finding is consistent with studies on eating
disorder support groups that report similar feelings of connection and belonging through
connecting with people who share similar experiences and struggles (Kendal et al., 2017a).
Many participants described the sense of safety they felt in the group. Participants
mentioned feeling incredibly isolated due to the eating disorder and being unable to speak
publicly without feeling shame or judgement. These feelings of shame and isolation are often
associated with eating disorders and are significant barriers to help seeking (Levine, 2012).
Moreover, people with eating disorders often withdraw from their social networks, which can
compound the eating disorder symptoms resulting in further isolation (Treasure et al., 2009).
The participants reported that the support group provided “an avenue to be socially active”
and a safe space to openly and honestly talk about their eating disorders. Therefore, the
finding suggests that the support group served as an important means of preventing social
isolation. This finding is in line with previous studies that indicate participation in support
groups help in overcoming social isolation (Kendal et al., 2017a;Worrall, 2018).
Likewise, participants articulated that they benefitted from listening to past participants
recovery progress that allowed the participants to gain insights about their illness which
suggests the support group fostered hope and motivation. This finding is consistent with
previous studies where participants report that receiving social support from peers fosters
hope and motivates them to continually attend the support groups (Worrall, 2018).
In addition, the results revealed some challenges to the functioning of the monthly support
group which was explored under the theme cautions and concerns. Participants shared some
limitations to achieving a positive experience in the support group. They mentioned living
with social anxiety and feeling intimidated and worried about scrutiny which they reported
prevented them from speaking up in the group. Research indicates eating disorders and social
anxiety disorder are highly comorbid (Levinson and Rodebaugh, 2012). This finding
highlights the complexity of living with an eating disorder.
QRJ
Worry of scrutiny and anxiety also manifested in the way of body-related social
comparison, that is, when people compare their appearance to that of others (Hamel et al.,
2012). Body-related social comparison is strongly associated with eating disorders (Hamel
et al., 2012). This over evaluation of shape and weight is at the core of most eating disorders
and is a major concern for people with eating disorder. This finding reveals how body-related
comparison-making plays out in support groups as few participants expressed the
discomfort they experienced when seeing the bodies of other participants. Participants
went on to express how comparison-making was a barrier for not using the support group
more frequently and it was one of the least useful aspects of the support group. This finding
has not been explored in other studies and needs further exploration. Due to the serious and
complex nature of eating disorders, these findings suggest that facilitators need to be aware
and perhaps, trained to understand these internal processes, including comorbidities in order
to ensure safety in the group, to prevent such concerns from potentially fuelling the disorder
and to retain group participation (Hamel et al., 2012). Moreover, few participants expressed
their concerns about other issues relating to group dynamics and processes. Some expressed
concern over dominant group members who monopolised the group, whilst others reported
the lack of variety and repetition in group discussions. This finding suggests the challenges
of having an open group and perhaps, highlights the value of having the expertise of
professional facilitators to manage issues relating to group dynamics and processes
(Worrall, 2018).
Additionally, participants requested psycho-educational information and support, in the
form of “mini-topic/lessons”. Psycho-educational information and support can range from
information about mental illnesses and their treatments, to providing communication, coping,
social and problem-solving skills (Lefley, 2009). Evidence suggests that psycho-educational
support can be a useful addition to the mutual understanding that support groups offer to
people with mental illness (Lefley, 2009). This finding suggests that professional facilitators
with the appropriate training and expertise can fulfil a valuable education function.
Finally, the findings highlight the influence of professional facilitators in the support
group. There is limited research on the role of professional facilitators in relation to eating
disorder support groups which this study was able to explore. Participants reported the
facilitators’assertive compassionate ensured trust and a sense of safety in the group.
Participants reported the assertive approach of the facilitators in moderating and steering
conversation in the right direction and managing triggering language made them feel safe to
share their experiences in the group. Moreover, most participants expressed appreciation for
feeling emotionally supported by the facilitators’compassionate and non-judgemental
stance. Given that people living with eating disorders often experience stigma and shame
which can result in mistrust in others, this finding suggests that when supporting people with
eating disorders the involvement of professional facilitators, who have knowledge and
training of the illness, can be valuable, and perhaps required, in ensuring trust and safety and
in retaining group participation (Linville et al., 2012). This finding is consistent with research
that highlights the valuable role of professional facilitators in ensuring safety in group.
In conclusion, the study provided a comprehensive account of the experiences of adults
recovering from an eating disorder in a professionally-led monthly group. The findings of this
study indicate that the support group provided a safe space for participants to share their
lived experiences, that it reduced stigma and isolation, and improved their motivation and
engagement which are consistent with the existing literature on the topic (Worrall, 2018).
Moreover, the findings revealed some challenges to the functioning of the group. These
included management of discussions and dominant members, need for psycho-educational
information and managing intense feelings, relating to body-related comparison and other
mental disorder comorbidities. Furthermore, the findings suggest that the professional
facilitators’assertive compassionate approach ensured safety and trust in the group.
Experience of
eating disorder
support group
5.1 Limitations
The limitations of the study are mainly associated with the lack of diversity, lack of in-depth
responses and small sample size. There was an overrepresentation of female participants.
Two participant responses were excluded from the data analysis as their questionnaire
responses were incomplete. In some instances, responses lacked detail and depth. To
overcome the limitations of the lack of in-depth response, qualitative semi-structured
interviews that allow for more detailed information and more in-depth exploration is
recommended.
5.2 Clinical implications
An implication of the findings of this study is that professionally-led support groups can be a
significant adjunct in supporting people with eating disorders in their recovery journey.
Participants reported the support group was effective in reducing social isolation and in
fostering hope and motivation in their recovery journey. In addition, online professionally-led
groups could be very useful in minimising the comparisons made between members rather
than in-person groups. These findings suggest that eating disorder professionally-led
support groups (both online and/or face to face) can be practical and cost-effective
interventions that can be used to respond to the gaps in treatment services, and to establish,
foster and reinforce social networks for people living with eating disorders.
In addition, the findings of this study also implicate that the professional facilitators
contributed to the success of the support group. The participants reported the valuable role of
the facilitators in mitigating some of the challenges the group experienced, particularly
relating to body-comparison and safety issues. Moreover, the findings suggest that
professional facilitators can fulfil a valuable education function in supporting participants in
eating disorder support groups. Therefore, training facilitators seems crucial for overcoming
these challenges and in fulfilling education needs of support group participants.
5.3 Recommendations
Future studies should consider a more comprehensive understanding of professional
facilitator training methods related to eating disorder support groups. Additional studies that
access a more diverse population and different eating disorder support group service
providers are recommended.
References
American Psychiatric Association (2013), “Eating disorders”,Diagnostic and Statistical Manual of
Mental Disorders, 5th ed., doi: 10.1176/appi.books.9780890425596.dsm05.
American Psychology Association (2018), “Support group”, available at: http://dictionary.apa.org/
support-group.
Arcelus, J., Mitchell, A.J., Wales, J. and Nielsen, S. (2011), “Mortality rates in patients with anorexia
nervosa and other eating disorders: a meta-analysis of 36”,Studies Archives of General
Psychiatry, Vol. 68 No. 7, pp. 724-731, doi: 10.1001/archgenpsychiatry.2011.74.
Australian Institute of Health and Welfare (2018), Australia’s Health 2018. Australia’s health series
No. 16. AUS 221, AIHW, Canberra.
Barker, K.K. (2002), “Self-help literature and the making of an illness identity: the case of fibromyalgia
syndrome (FMS)”,Social Problem, Vol. 49 No. 3, pp. 279-300, doi: 10.1525/sp.2002.49.3.279.
Barlow, D.H. (2014), Clinical Handbook of Psychological Disorders, 5th ed., Guilford Press, New York.
Braun, V. and Clarke, V. (2008), “Using thematic analysis in psychology”,Qualitative Research in
Psychology, Vol. 3 No. 2, pp. 77-101, doi: 10.1191/1478088706qp063oa.
QRJ
Butterfly Foundation (2019), “Support for Australians experiencing eating disorders”, available at:
https://thebutterflyfoundation.org.au/our-services/support-groups/.
Dyaram, L. and Kamalanabhan, T. (2005), “Unearthed: the other side of group cohesiveness”,Journal
of Social Sciences, Vol. 10, pp. 185-190, doi: 10.1080/09718923.2005.11892479.
Hamel, A.E., Zaitsoff, S.L., Taylor, A., Menna, R. and Le Grange, D. (2012), “Body-related social
comparison and disordered eating among adolescent females with an eating disorder,
depressive disorder, and healthy controls”,Nutrients, Vol. 4 No. 9, pp. 1260-1272, doi: 10.3390/
nu4091260.
Hay, P., Mitchison, D., Collado, A., Gonzalez-Chica, D.A., Stocks, N. and Touyz, S. (2017), “Burden and
health-related quality of life of eating disorders, including Avoidant/Restrictive Food Intake
Disorder (ARFID), in the Australian population”,Journal of Eating Disorders Vol. 5 No. 21, doi:
10.1186/s40337-017-0149-z.
Kendal, S., Kirk, S., Elvey, R., Catchpole, R. and Pryjmachuk, S. (2017a), “How a moderated online
discussion forum facilitates support for young people with eating disorders”,Health
Expectations, Vol. 20 No. 1, pp. 98-111, doi: 10.1111/hex.12439.
Kurtz, L.F. (1997), Self-help and Support Groups: A Handbook for Practitioners, Sage Publications,
Thousand Oaks.
Lefley, H.P. (2009), “A psychoeducational support group for serious mental illness”,Journal for
Specialists in Group Work, Vol. 34 No. 4, pp. 369-381, doi: 10.1080/01933920903219094.
Levine, M.P. (2012), “Loneliness and eating disorders”,Journal of Psychology, Vol. 146, pp. 243-257, doi:
10.1080/00223980.2011.606435.
Levinson, C.A. and Rodebaugh, T.L. (2012), “Social anxiety and eating disorder comorbidity: the role
of negative social evaluation fears”,Eating Behaviors, Vol. 13 No. 1, pp. 27-35, doi: 10.1016/j.
eatbeh.2011.11.006.
Linville, D., Brown, T., Sturm, K. and McDougal, T. (2012), “Eating disorders and social support:
perspectives of recovered individuals”,Eating Disorders, The Journal of Treatment and
Prevention, Vol. 20 No. 3, pp. 216-231, doi: 10.1080/10640266.2012.668480.
Mancini, M.A., Linhorst, D.M., Menditto, A.A. and Coleman, J. (2013), “State-wide implementation of
recovery support groups for people with serious mental illness: a multidimensional evaluation”,
The Journal of Behavioral Health Services and Research, Vol. 40 No. 4, pp. 391-403, available at:
https://psycnet.apa.org/doi/10.1007/s11414-013-9351-1.
McCabe, S.E. (2004), “Comparison of web and mail surveys in collecting illicit drug use data: a
randomized experiment”,Journal of Drug Education, Vol. 34 No. 1, pp. 61-72, doi: 10.2190/
4HEY-VWXL-DVR3-HAKV.
McCormack, A. and Coulson, N.S. (2009), “Individuals with eating disorders and the use of online
support groups as a form of social support”,Cyberpsychology: Journal of Psychosocial
Research on Cyberspace,Vol.3No.2,p.5,availableat:https://cyberpsychology.eu/article/
view/4228/3271.
Mitchison, D., Hay, P., Slewa-Younan, S. and Mond, J. (2012), “Time trends in population prevalence of
eating disorder behaviours and their relationship to quality of life”,PloS One, Vol. 7 No. 11,
e48450, available at: http//doi.org/10.1371/journal.pone.0048450.
Palaganas, E.C., Sanchez, M.C., Molintas, M.P. and Caricativo, R.D. (2017), “Reflexivity in qualitative
research: a journey of learning”,Qualitative Report, Vol. 22 No. 2, pp. 426-438, available at:
https://nsuworks.nova.edu/tqr/vol22/iss2/5.
Palinkas, L.A., Horwitz, S.M., Green, C.A., Wisdom, J.P., Duan, N. and Hoagwood, K. (2015),
“Purposeful sampling for qualitative data collection and analysis in mixed method
implementation research”,Administration and policy in mental health, Vol. 42 No. 5,
pp. 533-544, doi: 10.1007/s10488-013-0528-y.
Experience of
eating disorder
support group
Pasold, T.L., Boateng, B.A. and Portilla, M.G. (2010), “The use of a parent support group in the
outpatient treatment of children and adolescents with eating disorders”,Eating Disorders,
Vol. 18 No. 4, pp. 318-332, doi: 10.1080/10640266.2010.490121.
Stevinson, C., Lydon, A. and Amir, Z. (2010), “Characteristics of professionally-led and peer -led cancer
support groups in the United Kingdom”,Journal of Cancer Survivorship, Vol. 4 No. 4,
pp. 331-338, available at: http//doi.org/10.1007/s11764-010-0129-7.
Treasure, J., Schmidt, U. and Macdonald, P. (2009), The Clinician’s Guide to Collaborative Caring in
Eating Disorders: The New Maudsley Method, Routledge, New York.
Tufford, L. and Newman, P. (2010), “Bracketing in qualitative research”,Qualitative Social Work,
Vol. 11, pp. 80-96, doi: 10.1177/1473325010368316.
Ussher, J., Kirsten, L., Butow, P.N. and Sandoval, M. (2008), “A qualitative analysis of reasons for
leaving, or not attending a cancer support group”,Social Work in Health Care, Vol. 47 No. 1,
pp. 14-29, doi: 10.1080/00981380801970673.
Vossler, A. and Moller, N. (2015), The Counselling and Psychotherapy Research Handbook, SAGE
publications, London.
Worrall, H., Schweizer, R., Marks, E., Yuan, L., Lloyd, C. and Ramjan, R. (2018), “The effectiveness of
support groups: a literature review”,Mental Health and Social Inclusion, Vol. 22 No. 2, pp. 85-93,
doi: 10.1108/MHSI-12-2017-0055.
Yalom, I.D. (1995), The Theory and Practice of Group Psychotherapy,4thed.,BasicBooks,
New York.
Appendix 1
Questionnaire
Thank you for agreeing to take this survey. Please ensure that you have read the participation
information statement before completing the survey. All of the answers you provide in this survey will
be kept confidential. If at any time you feel distress and do not want to continue, you can do so, by simply
closing the browser. The services sheet is attached should you need to connect with a counselling
service. You are invited to take as much or as little time to answer the questions. Please consider each
question below. Thank you for your time.
Question 1: What is your gender?
Question 2: How often have you attended the support group?
Question 3: How did you hear about the support group?
Question 4: For how long have you had an eating disorder?
Question 5: What were your main reasons for attending the support group?
Question 6: What were the most useful aspects of the group to you? (socially, emotionally and in
terms of coping strategies and skills).
Question 7: What were the least useful aspects?
Question 8: How do you view your recovery process/journey?
Question 9: How does the support group relate to your sense of well-being and recovery?
Question 10: What were the barriers for not using the support group?
Question 11: Which aspects of the support group could change or improve?
Question 12: What was your experience of the facilitator? Please elaborate.
Question 13: Any additional suggestions or comments?
QRJ
Appendix 2
Thematic analysis
Corresponding author
Chiara Paganini can be contacted at: Chiara.Paganini@acap.edu.au
For instructions on how to order reprints of this article, please visit our website:
www.emeraldgrouppublishing.com/licensing/reprints.htm
Or contact us for further details: permissions@emeraldinsight.com
Themes
Frequency
% Sub-theme
Frequency
% Example
Sharing the pain
and the promise
53% Collective illness
identity
24% I think it is more the fact that everyone
understands and can hugely relate to
each other’s journey/struggle/story in
some way, shape or form that you know
“professionals”, family etc do not or
cannot.
“To Feel Less
Alone.”
16% A lot of sufferers obviously are and feel
very isolated with the illness, so this
group also gives them an avenue to be
socially interactive or be more open to
speak publicly and with no shame or
judgement attached.
Instils hope and
motivation
13% It’s good to see some of the people
returning each month and hearing their
progress and learning new skills that
help them that I can implement
Cautions and
concerns
26% Internal
experiences
15% It can be a little bit intimidating because
of my social anxiety, but this is not a
problem with the group–so much as it
was just an issue for me
Group dynamics
and processes
11% Also when new people start the groups
when others have been coming for a
while, there tends to be a lot of
repetition of conversations and that is
also understandable and fine because
they are new to the group but also
means return people do not get as much
out of the sessions as the conversations
do not move on from introductions of
stories etc
Facilitator role 21% Assertive
compassion
16% Really good. They are always warm
and kind and do a good job of keeping
the conversation on track and away
from triggering language
Safety 5% She’s (facilitator) lovely, prompts
everyone in the room to share if they
would like to and steers in the right
direction that is safe for everyone
Table A1.
Emergent coding
themes as categories in
professionally eating
disorders
support group
Experience of
eating disorder
support group
