Introduction
Eating disorders (EDs) are recognised by the World Health Organisation (WHO) as a mental health disorder (WHO, 2005). The main EDs identified in the Diagnostic and Statistical Manual of Mental Health Disorders (DSM-5) (American Psychiatric Association) are anorexia nervosa, bulimia nervosa and binge eating disorder, which can lead to psychological and physical complications, some of which are life threatening (Royal Collage of Psychiatrists, 2015). Overall, the lifetime prevalence of the three main EDs is approximately 4% (National Institute of Mental Health, 2016). The causes of EDs are now often understood in the context of a bio-psychosocial approach (National Institute for Clinical Health and Care Excellence, 2017) and are not considered a lifestyle choice (Lock et al. Reference Lock and La Via2015). Indeed, its impact on the person experiencing an ED is extensive. Yet, despite its impact on them and their families and significant other(s) (Hillege et al. Reference Hillege, Beale and McMaster2006; Zabala et al. Reference Zabala, Macdonald and Treasure2009; Papathomas et al. Reference Papathomas, Smith and Lavallee2015), there is often limited engagement with families and significant other(s) by Adult Mental Health Services (AMHSs). Meaningful inclusion of families and significant other(s) in AMHSs is an important aspect of treatment which refers to their inclusion (with the service user’s permission) in some aspects of the ED service: for example, family meetings and review meetings. Throughout this article, we will use the term ‘families’ when referring to ‘families and significant others(s) of people with EDs’.
EDs in an Irish context
Within the Irish context, the Department of Health and Children (DOHC, 2006) estimated that there were over 200 000 people (adults and children) experiencing an ED in Ireland. Furthermore, they report that approximately 400 new cases emerge yearly, resulting in 80 deaths per annum. Based on epidemiological evidence, the Health Service Executive’s (HSE) National Clinical Programme Model of Care for Eating Disorders (HSE, 2018) (NCP MoC in EDs) estimated 188 895 people have experienced an ED at some point in their lives in Ireland (based on an Irish census population in 2016 of 4 722 364). They also estimate that approximately 1 757 new cases occur in Ireland each year in the 10–49 age groups. In addition, a study of Irish adolescents (1 841 girls, 1 190 boys) found that disordered eating was more prevalent among girls than boys (McNicholas et al. Reference McNicholas, Dooley, McMamara and Lennon2012). Regarding pubertal status, greater maturity in girls was associated with increased eating concerns, a higher drive for thinness and higher levels of body dissatisfaction. For boys, greater maturity was associated with lower body dissatisfaction and lower scores in the drive for thinness. Early maturing girls and late maturing boys show elevated levels of disordered eating (McNicholas et al. Reference McNicholas, Dooley, McMamara and Lennon2012).
With regards to adults accessing help for EDs, up to quite recently a significant cohort of those who had health insurance were likely to have attended private mental health hospitals both as in-patient and out-patient rather than public mental health services (Sheridan, Reference Sheridan2013). However, those without insurance can also attend their local mental health service for treatment for their eating difficulties. In both cases, access to private and public ED services is usually made through their General Practitioner (G.P.). What is interesting with regard to treatment for EDs within mental health care is that clinicians from different disciplines have been found to hold more negative attitudes to ED service users than other conditions (Thompson-Brenner et al. Reference Thompson-Brenner, Stir, Franko and Herzog2012). In Ireland, the Stigma and Treatment of Eating Disorders in Ireland (STEDI) (McNicholas et al. Reference McNicholas, O’Connor, McNamara and O’Hara2015) study found that even clinicians with moderately good knowledge of EDs show poor recognition of symptoms and tend to view EDs as a group of chronic, female-based conditions. In addition, these clinicians said that they would prefer to work with other conditions (McNicholas et al. Reference McNicholas, O’Connor, McNamara and O’Hara2015).
This attitude may be as a result of tradition, as already indicated above; in the past, it was mostly women with severe and persistent anorexia nervosa who presented to public AMHS. Hence, lack of apparent alternative approaches often impacted on the clinician’s treatment options, and as a result the focus was on refeeding, which often resulted in frustration on all sides. This was also the lead author’s experience of working in Irish Mental Health Services (IMHSs) in the past. However, there were international approaches available, such as the feminist relationist perspective by Mia Andersson. Her work focused on the mother–daughter relationship and connecting and reconnecting with each other which produced good results (Andersson, Reference Andersson1995).
The NCP MoC for EDs (2018) was launched a year ago, and it is expected that all Mental Health Services (MHSs) should begin/continue to develop ED programmes for people in their catchment area. Considering the negative views expressed in regard to clinicians’ attitudes to service users with EDs, those rolling out this new model of care hope to engage all MHSs in developing ED programmes. They also hope to change these attitudes in a positive direction by engaging clinicians in a collaboratively informative process.
EDs and families
EDs can be construed by a family therapist as an emotional disorder and families can be construed as an emotional system (Robinson Lafrance et al. Reference Robinson Lafrance, Dolhabty and Greenburg2013). Hence, the impact of EDs on service users and families can be substantial and highly emotional. The possible impact on the family system includes confusion, grief, anger, guilt, fear, uncertainty and feeling deskilled about how to be helpful. This can hinder the recovery process (Barrow, Reference Barrow2007; Scheel, Reference Scheel2012). Hillege et al. (Reference Hillege, Beale and McMaster2006) found that the impact of EDs can lead to family disintegration or unification, service users’ and families’ ability to cope, and where all become involved and contribute to a guilt/blame cycle, due to uncertainty about ways forward (Hillege et al. Reference Hillege, Beale and McMaster2006).
In addition, service users and families have also experienced inconsiderate comments from others, social isolation and financial stress, and felt ostracised and blamed by some mental health professionals for being the cause of the ED and/or making the service user increasingly unwell (El-Sayad, Reference El-Sayad1998). Furthermore, ED literature is often written from the perspective of those with the ED and their therapists, with very little mention of families. For example, Sheridan (Reference Sheridan2013) wrote a thesis on ‘Experiences of Support Services for Eating Disorders in Ireland: An Exploratory Study’; however, it did not address families’ issues. Hence, it is possible that families risk been seen negatively by clinicians if they just concentrate on the service user and pay little attention to families.
As a result, the impact on families was seldom acknowledged and their needs were unrecognised and neglected by health professionals (Highet et al. Reference Highet, Thompson and King2005), even when their relative’s ED became severe (Arcelus et al. Reference Arcelus, Mitchell, Wales and Nielsen2011). Consequently, families of adult service users could be excluded and their input minimised. This is unfortunate, as Zabala et al. (Reference Zabala, Macdonald and Treasure2009) found that EDs appear to have powerful consequences for those who find themselves in the position of caring for the person with an ED: consequences such as suffering from potential distress, symptoms of anxiety, depression, as well as experiencing a high level of burden and expressed emotion, with critical comments. In fact, they experience higher levels of anxiety, depression and expressed emotion than families who have a relative with psychosis (Zabala et al. Reference Zabala, Macdonald and Treasure2009). Considering the above, if families then experience a clinician excluding them from any meaningful involvement in their recovery, it might further increase their sense of isolation.
Hence, an ED not only affects service users, but also has an impact on families and the treatment system around them, which includes the treating clinicians, as all involved can influence the process of recovery both positive and negatively. Indeed, treatment systems can become stuck with felt burden/guilt/frustration, where an unconscious mutual interactive pattern occurs that can involve all parties. In the main, when families become involved in the ED services it can result in more positive outcomes (Family Intervention in Adolescent Anorexia 2005; Rienecke Hoste et al. Reference Rienecke Hoste, Celio Doyle, Le Grange, Alexander and Treasure2012).
National Clinical Programme Model of Care for EDs
The MoC for EDs in Ireland was launched in January 2018 [National Clinical Programme Strategy and Programmes Division and National Mental Health Division (2018): Eating Disorder Service, HSE Model of Care for Ireland]. It is an extensive document that includes, in detail, many aspects of how best to help those who are experiencing an ED; for children and adults.
Bodywhys, the Eating Disorder Association of Ireland, was the main organisation to represent families in developing this model of care. Bodywhys provides services supported by the HSE including a 4-week support and education to groups of family members who have a relative/significant other(s) experiencing an ED, which is called PiLaR: Peer Support Led Resilience (Parsons, Reference Parsons2018). These groups meet once a week for 4 weeks, and feedback from these families is positive regarding understanding EDs, ways to help their relative/significant other(s) and obtaining support from other attendees. Bodywhys also shares any relevant information and/or families’ views with the national programme. This is an important programme as it helps families to understand the process and impact of the ED on them and the service user, and to develop appropriate skills to help their loved one recovery.
However, the service user does not attend these meetings. It is our contention that as well the PiLaR programme, a family system approach should be used, where the relationships and family dynamics between the service user and family are addressed in single family therapy meetings.
Furthermore, this issue is not addressed in the MoC for EDs. Its absence is somewhat unexpectedconsidering that the National Clinical Programme for Early Intervention in Psychosis (EIP) has as one of its main strands as family intervention and treatment through single family meetings. In addition, the HSE also engaged families who were considered central in the development of National Clinical Programme for the Assessment and Management of Patients Presenting to Emergency Departments following Self-Harm (Management of Patients Presenting to Emergency Departments following Self-Harm, 2016). This poses the question as to why, on one hand, it is considered helpful that those that experience a psychosis that their family engage with a family worker in order to help and promote the service user and their family recovery, as well as those with self-harm issues on their treatment and recovery.
Yet, on the other hand, it appears, meaningful family involvement through single family therapy meetings has not, as yet, the same recognition on the MoC for EDs. This is despite the high levels of psychological distress, burden and expressed emotion in caregivers of people with EDs, which can also have a reciprocal impact on the service user: reciprocal in the sense that as part of a family dynamic, what happens to a family member impacts on the family system, and vice versa. Indeed, as already indicated, these families can experience more stress and burden than those families who have a member with psychosis (Zabala et al. Reference Zabala, Macdonald and Treasure2009). That said, generally most IMHSs recognise and are positive towards including families in the involvement of the service user’s mental health treatment plan, which consistently research evidence has supported, yet it is also recognised that its implementation rates can be poor (Giacco et al. Reference Giacco, Dirik, Kaselionyte and Priebe2017).
Issue of confidentiality
Service users do have a right to privacy and confidentiality, which needs to be protected in keeping with both medical ethics and data protection laws. Nevertheless, there is a growing body of evidence on what constitutes the boundaries of service users’ confidentiality and its impact on families. One possible barrier to a more open communication and a relational family systems approach is when some AMHSs clinicians hold as sacrosanct that information about the service users’ care is private and cannot be shared with families. Another possibility is when a service user does not want their family involved in their care and is against sharing any information, or unaware by the absence of discussion about the possibility of family meetings. Occasionally, there are situations where family members do not want to be involved as they are afraid or feel helpless. It could also be said that clinicians may feel deskilled or disempowered at times and uncertain how to proceed with family involvement.
Despite the various challenges, there is increased recognition in the literature that appropriate information sharing is necessary to support family recovery. Such as, Refocus (2013) advocates that where there is full or partial absence of consent ‘bounded confidentiality’ should occur, where a service user is encouraged to indicate what information they want to share with their family. This approach is also echoed in the Vision for Change (Department of Health and Children, 2006) document which encourages MHSs to reorientate their service to include families/significant other(s):
‘Involvement of service users and their carers should be a feature of every aspect of service development and delivery’
Department of Health and Children (2006: 9)
This policy document indicates that carers, families and identified significant other(s) have at the least some ‘right’ to be involved in the care and recovery of their loved one, in addition to service user rights. Therefore, while mental health professionals have a duty to protect service user autonomy, they also have a duty of care to address the needs of families, and their potential to contribute to the service users’ recovery. In fact, the majority of families do want to be involved in the recovery process of their relative, in particular to be informed about how they can be of help, and to be informed of any potential risks. In addition, it also sometimes can help families to question their own behaviour and wonder can they make changes themselves, in order to help the person experiencing an ED.
Community Integrated ED Programme
In order to provide a more family systemic-oriented approach, the Community Integrated Eating Disorder Program (CIEDP) was developed in 2000, initially in the Carlow AMHS, then later in the Kilkenny and South Tipperary AMHSs. This service was created in order to provide out-patient services for adults with a diagnosable EDs and their families, who are living in the geographical area covered by the Carlow Kilkenny South Tipperary MHS. It is an integrated treatment model that includes treatment and interventions in the following key areas: psychosocial, psychological, relational, dietetics, medical care and monitoring, and appropriate medication management when warranted, with an emphasis on rapid response. This integrated approach is important, as from a systemic perspective it promotes a close, transparent, collaborative relationship between the service user, family members and all the clinicians involved. To date, the programme has received 230 referrals. In 2009, the CIEDP held a national conference in Carlow regarding our out-patient programme, which was supported by the local MHSs and the Nurse and Midwifery Planning Development Unit (NMPDU) in the south east of Ireland. The Family Therapy Team in the Carlow Kilkenny MHS also published a paper on therapeutic engagement with the person experiencing an ED and their family (Boland et al. Reference Boland, Bollard, Hackett and O’Neill2009).
The CIEDP has a number of strands: psychiatric assessment and treatment; individual assessment and therapy – Psychology; and/or Cognitive Behavioural Psychotherapy for EDs (CBTe), family assessment and therapy; nutrition and dietetics assessment and therapy (Senior Dietician); family/significant other(s) support and education meeting, and G.P. medical reviews. It also promotes information sharing with other support groups, in particular Bodywhys. There is also an active Hub and Spoke model led by a clinical lead.
Family therapy and consent in action
The CIEDP addresses the service users’ confidentiality and consent issues by providing individual meetings with all stakeholders. The service user also meets with a family therapist to discuss family involvement and obtain permission for their inclusion, which is recorded in the service user file. This is a four-step process. Step one, referrals are received from Community Mental Health Teams (CMHTs), and thus it is presumed that the service user has given permission to be referred. Step two, the ED coordinator meets with the service user and outlines all aspects of the CIEDP, and the role of the clinicians who are part of the programme, along with answering/clarifying any issues that arise. The service user can either give permission to proceed or decline to come on the CIEDP. Step three involves meeting an individual therapist (psychologist or CBT therapist) for an assessment. In addition, she/he and their family also meet a family therapist for an assessment where single family therapy meetings are discussed and demonstrated. Step four, a therapeutic agreement is agreed on.
With regard to the single family therapy meetings, the service user and family decide what to share and withhold. Furthermore, they also give permission to talk about identified issues when they speak in the session about worries, concerns and hope, and by contributing to discussions that arise. Hence, a ‘both/and’ approach is used which fulfils the duty of care to both parties.
With regard to our systemic family therapy approach, it involves a collaborative, informed and rolling consent approach between the therapist(s), the adult service users experiencing an ED, and family and sometimes friends. In addition, despite occasionally attempting to isolate themselves, service users with EDs and family members remain embedded in various relationship networks, such as family of origin, intimate relationships, friends, work colleagues and others within their community. Therefore, it is important to meet with the service user and their identified network support(s), as they are a resource for the service user in their recovery journey (Treasure et al. Reference Treasure, Schmidt and Macdonald2010). Throughout this article, we will use mainly the term ‘family therapy’ when referring to ‘systemic family therapy’.
Negotiation and partnership
This approach encourages all participants to be responsible for attending and engaging in the process of recovery. With regard to family therapy meetings, negotiation occurs in every meeting about what level of support they can give each other until the next meeting. This allows both parties to contribute to an agreed therapeutic plan, thereby making it relevant and useful through collaboratively working together. It also gives those involved rolling consent to continue meeting.
Systemic family therapy for adult service users experiencing an ED and their families/significant other(s)
Systemic family therapy has been involved in the development and organisation of the Carlow Kilkenny AMHS (which is now the Carlow Kilkenny South Tipperary MHS) out-patient ED programme since 2000. In the last 19 years, over 80% of families attended for family therapy meetings as part of the CIEDP.
Historical perspective of family therapy and EDs
In the 1960s, many therapists began to take interest in the interactional context on the lives and symptoms of individuals (Ackerman, Reference Ackerman1958, Reference Ackerman1966; Bateson, Reference Bateson1972; Bowen, Reference Bowen1966; Minuchin et al. Reference Minuchin, Montalvo, Guerney, Rosman and Schumer1967 and others). They began to understand that problems could be resolved when the family participated in therapy, thereby developing different approaches to family systems therapy (Frude, Reference Frude1992). These and others were the first to help those experiencing EDs and their families. One family systems approach was the ‘Milan Method’ (Selvini Palazzoli et al. Reference Selvini Palazzoli, Boscolo, Cecchin and Prata1980), which used hypothesising, circularity, neutrality, as well as ‘paradox and counter paradox’ (Selvini Palazzoli et al. Reference Selvini Palazzoli, Boscolo, Cecchin and Prata1978). As already indicated, another approach is Salvador Minuchin Structural Family Therapy, who promoted involvement of all family members, and organised family meals where parents had to take charge (Minuchin, Reference Minuchin1974; Minuchin & Fishman, Reference Minuchin and Fishman1981). Hence, family system therapy has been involved in the last five decades in helping those families that has a person experiencing an ED.
However, despite family therapy’s involvement over a long period of time, single family therapy meetings have so far not been included in the MoC in EDs. To some extent, it is understandable how single family therapy meetings could have been overlooked, as it might be as a result of relying on older approaches where it is assumed that in some way the parents are part of the problem. Also, therapists treating EDs may be more familiar with individual approaches and unfamiliar with family therapy so are not in a position to recommend it. However, that said, the next section will outline a rationale for the inclusion of systemic family therapy in the MoC in EDs.
Systemic family therapy and the inclusion of whole family therapy meetings
In our practice, it is clear to us that all families and most service users have tried to, in varying degrees, access help. For this reason, it is essential to actively involve families in a meaningful way in the treatment of their relative’s difficulties, as they usually either live with the service user or have significant contact with them.
It is also important to note that families of those with long-term EDs often have extensive experience of trying a variety of approaches in their attempts to be of help. Family therapists are in a unique position to provide help in the here and now through facilitating the adult service user and their family to articulate and feel safe enough to be heard regarding what is considered helpful and not so helpful, in relation to everyone’s recovery. This approach also can contribute to the creation of joint understandings and develop ways forward towards recovery, by implementing a step-by-step approach. These single family therapy meetings are also important as they can facilitate the reduction of critical comments and high expressed emotion, and create and facilitate therapeutic dialogue in real time, while not addressing these issues can lead to poorer outcomes (Uehara et al. Reference Uehara, Kawashima, Goto, Tasaki and Someya2001).
Initially, all participants need acknowledgement and confirmation regarding what is going well for the service user and family, but also opening discussion about help with issues that all are struggling with needs to be addressed, in particular, issues such as patterns of behaviour since the development of the EDs and its impact on all involved. In addition, when relevant, addressing issues of guilt, trauma, family of origin’s view on food and intergenerational issues. Furthermore, it can help the family system to create an agreed way forward regarding communicating and problem solving to reduce stress, tension and excessive critical comments. The aim is to creating a network of family members (including the ED team) to provide support and advice for the service user.
EDs can also be understood as a toxic secret that can emerge in families (Imber-Black, Reference Imber-Black1998). Typically, the secret relating to the ED has taken an immense toll on relationships and sometimes for many years has remained untold and unavailable. While family members may see and feel its impact, they are frequently confused as to its meaning. The secret affects everyone. For example, one service user kept her anorexia secret from her boyfriend and family as she felt it was the only way to feel in control, and outwardly appear to be contented as a stay at home mother. However, she also hid her dream to go to college. Once she revealed her ‘secrets’, in time, she addressed her eating difficulties and went to college and fulfilled her goals.
The family therapy element of the programme endeavours to provide a ‘safe enough’ space for families to begin to talk more openly about the ED and their family relationships which have evolved around it in a different way. Seikkula & Arnkil (Reference Seikkula and Arnkil2006) suggest that when people talk with each other, they obtain new meaning through these interactions. Each interaction is unique to a particular place to those involved (Seikkula & Arnkil, Reference Seikkula and Arnkil2006).
Another approach is emotional focused therapy, developed by Johnson (Reference Johnson2004) and applied widely as an integral part of systemic family therapy. It offers a way of understanding the development of emotional difficulties in EDs. In this therapeutic approach, patterns of attachment through three generations are explored and the narrative family members hold about the nature of earlier relationships are discussed. Therapy aims to help to generate new connections and narratives about their current relationships (Johnson, Reference Johnson2004). In addition, Andersson (Reference Andersson1995) looked particularly at the mother–daughter attachment and hypotheses that an incomplete attachment between mother and daughter is at the heart of anorexia and bulimia nervosa (Andersson, Reference Andersson1995).
Since the inception of the programme, it has been our stance that adults with EDs remain in relationships (including their relationship with food). How they interact in these relationships creates ways in which they come to know and talk about their worlds. It is also our experience that families of people with an ED welcome involvement in the treatment process.
Concluding comments
With regard to many AMHSs and EDs, it appears that most are implementing aspects of the NCP MoC for EDs (2018) and apart from Bodywhys some are trying to include families, which is to be commended. However, it seems to appear that families are not yet included the process of recovery for the persons who are experiencing EDs in a meaningful way through single family therapy meetings. This absence means that relevant issues, in the here and now, such as relationship difficulties/worries/destructive patterns cannot be addressed systemically. Taking into consideration that these single family therapy meetings are the only forum in AMHSs where these issues can be discussed and hopefully resolved with the help of expert family therapy clinicians, it is regrettable that it was not recommended as an aspect of the NCP MoC for EDs.
As discussed, the idea behind the family systems approach is to create a space that allows family members to listen and talk to each other about their worries, fears and hopes, thereby fostering greater understandings and reflection. This approach also assists them to develop more ‘healthy’ supportive relationships with each other, through negotiations with regard to role, responsibilities and problem solving. In addition, when attending family therapy, the family therapy room can be seen as a neutral space where difficult issues are discussed and heard, and where families can contribute to dissolving the effects of the impact of the ED. Family therapy also aims to set up patterns of sustainable interaction that are age and life cycle appropriate. Hence, patterns of behaviour, cogitation and emotion can change within this process resulting in decreased critical comments and negative interactions, thereby developing new understanding regarding the impact of the ED. In other words, it helps families to see ways forward regarding developing hope and recovery.
In our opinion, the above can only occur if there are clinicians involved who have the expertise and experience of meeting service users who have an ED and their families, such as ‘systemic family therapists’. Family therapists encourage taking a wider, more comprehensive systemic approach, including families, in our programme. Furthermore, family therapists take a view of the whole epistemology and theoretical approach to EDs, which contributes to its enrichment. It is our contention that without the involvement of family therapy, it is our experience and belief that there will be a significant gap in the ED programmes that are being developed in the IAMHSs. Consequently, we encourage in particular AMHSs to utilise those family therapists in their service for the MoC for EDs (2018) (or employ them) in line with other NCPs. We expect that based on the above-mentioned arguments and evidence of the relevance of a family systems approach, that single family therapy meetings will be considered for any therapeutic programme for EDs. Furthermore, we would suggest that the next review of the MoC in EDs should include ‘systemic family therapists’ as standard as a part of the IAMHSs EDs team both locally and nationally.
Financial Support
This research received no specific grant from any funding agency, commercial or not-for-profit sectors.
Conflict of Interests
Sean Boland has no conflict of interest to disclose. Annette Byrne has no conflict of interest to disclose. Corry De Jongh has no conflict of interest to disclose. Willie Hackett has no conflict of interest to disclose. Sean O’Neill has no conflict of interest to disclose.
Ethical Standards
The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committee on human experimentation with the Helsinki Declaration of 1975, as revised in 2008. The authors assert that ethical approval for publication of this perspective piece was not required by our local Ethics Committee.
