Individuals with eating disorders’ perspective of barriers to care and unhelpful experiences

In the literature, individuals with eating disorders considered primary healthcare the most appropriate and opportunistic setting to diagnose eating disorders and intervene in the first instance.^{Reference Keel and Brown1,10,12,Reference Linville, Brown, Strum and McDougal24} Identified primary healthcare professionals included a GP/family physician or primary practice nurse,^{Reference Keel and Brown1,Reference Hay and Mond2,10,12,Reference Linville, Brown, Strum and McDougal24,Reference Gulliksen, Nordbo, Espeset, Skarderud and Holte32,Reference Gulliksen, Epeset, Nordbo, Skarderud, Geller and Holte33} social worker,^{Reference Keel and Brown1,Reference Gulliksen, Epeset, Nordbo, Skarderud, Geller and Holte33} dietician,^{Reference Gulliksen, Epeset, Nordbo, Skarderud, Geller and Holte33} counsellor or psychologist.^{Reference Keel and Brown1,10,12,Reference Gulliksen, Epeset, Nordbo, Skarderud, Geller and Holte33} However, the health professionals in primary care settings were reported as presenting challenges and difficulties at the early stages of help-seeking. Individuals with eating disorders reported lack of eating disorder experience, understanding and knowledge among primary care professionals, particularly among GPs, practice nurses and social workers.^{Reference Keel and Brown1,Reference Hay and Mond2,Reference Grave5,10,12,Reference Snilstveit, Oliver and Vojikova19,Reference Tierney21,Reference Robinson, Mountford and Sperlinger25} Furthermore, frequent failure to detect eating disorder symptoms and provide a timely diagnosis was described.^{Reference Keel and Brown1,Reference Snilstveit, Oliver and Vojikova19} For individuals with eating disorders, primary care professionals not only lacked time and resources^{Reference Grave5,Reference Rosenvinge and Klusmeier30} to diagnose and treat eating disorders, but were also ‘uninterested’ in eating disorders, believing it is simply a matter of ‘just eating’,^{Reference Robinson, Mountford and Sperlinger25} or focused on physical symptoms of an eating disorders.^{Reference Snilstveit, Oliver and Vojikova19,Reference Robinson, Mountford and Sperlinger25} In consequence, diagnosis of an eating disorders often only occurred when physical symptoms became severe and pronounced.^{Reference Keel and Brown1,Reference Snilstveit, Oliver and Vojikova19,Reference Robinson, Mountford and Sperlinger25} However, even in severe cases, long waiting lists and a lack of resources with no guarantee of admission and treatment by more specialised services for eating disorders were major barriers.^{Reference Keel and Brown1,Reference Hay and Mond2,Reference Grave5,Reference Snilstveit, Oliver and Vojikova19,Reference Tierney21,Reference Robinson, Mountford and Sperlinger25,Reference Rosenvinge and Klusmeier30} For individuals with eating disorders, the primary care service was described as an ‘obstacle’ or ‘barrier’^{Reference Keel and Brown1,Reference Snilstveit, Oliver and Vojikova19,Reference Gulliksen, Epeset, Nordbo, Skarderud, Geller and Holte33} to care, rather than the first port of call or effective ‘gate-keepers’ to specialist services.^{Reference Snilstveit, Oliver and Vojikova19}

Family/friends’ perspective of barriers to care and unhelpful experiences

Likewise, for family/friends of individuals with eating disorders, help-seeking was initially sought in primary care or community settings such as GP practices and schools,^{Reference Federici and Kaplan36,Reference Fox and Diab37,Reference Smith, Chouliara, Morris, Collin, Power and Yellowlees38,Reference Pettersen and Rosenvinge42} but self-help books, internet resources, support-based organisations or private treatment were where most of the ‘useful help’ was located.^{Reference Federici and Kaplan36,Reference Fox and Diab37} For some family/friends, primary health professionals were helpful^{Reference Fox and Diab37,Reference Smith, Chouliara, Morris, Collin, Power and Yellowlees38,Reference Escobar-Koch, Banker, Crow, Ringwood, Smith and Furth39,Reference Swain-Campbell, Surgenor and Snell40} in terms of providing ‘active support’, without blame or judgement.^{Reference Smith, Chouliara, Morris, Collin, Power and Yellowlees38} Some described ‘thorough and competent’ primary care professionals.^{Reference Escobar-Koch, Banker, Crow, Ringwood, Smith and Furth39} However, others found primary care a negative experience,^{Reference Smith, Chouliara, Morris, Collin, Power and Yellowlees38} feeling ‘fobbed off’.^{Reference Swain-Campbell, Surgenor and Snell40} They reported that primary care professionals lacked eating disorder knowledge^{Reference Fox and Diab37,Reference Smith, Chouliara, Morris, Collin, Power and Yellowlees38,Reference Escobar-Koch, Banker, Crow, Ringwood, Smith and Furth39} and the training required to diagnose and respond to eating disorders.^{Reference Pettersen and Rosenvinge42} They did not provide clear advice^{Reference Escobar-Koch, Banker, Crow, Ringwood, Smith and Furth39} or provide essential management of eating disorders.^{Reference Fox and Diab37,Reference Pettersen and Rosenvinge42} Knowledge of available treatment options^{Reference Fox and Diab37,Reference Smith, Chouliara, Morris, Collin, Power and Yellowlees38} and the ability to negotiate with other healthcare systems to get access to referrals was poor.^{Reference Federici and Kaplan36,Reference Fox and Diab37,Reference Smith, Chouliara, Morris, Collin, Power and Yellowlees38,Reference Pettersen and Rosenvinge42} This caused ‘frustration and anger’^{Reference Smith, Chouliara, Morris, Collin, Power and Yellowlees38} and ‘resentment’ towards the professionals.^{Reference Federici and Kaplan36} The process of help-seeking was described as a ‘long arduous journey’ by family/friends,^{Reference Federici and Kaplan36} and some described how their own resourcefulness and inexhaustible search for help ultimately helped the person with an eating disorder obtain the treatment they need – which is about being ‘not prepared to give up’ and do ‘whatever is necessary to aid recovery’.^{Reference Federici and Kaplan36}

Healthcare professionals’ perspective of barriers to care and unhelpful experiences

Professionals in primary care settings (for example GP practices, general wards, student/resident placements) described their professional role regarding eating disorders as a ‘double-bind’.^{Reference Reid, Williams and Burr63} They faced challenges and difficulties with individuals with eating disorders, their families and the eating disorder healthcare interface itself. Primary care professionals argued that individuals with eating disorders are difficult and challenging^{Reference Reid, Williams and Burr63} and create tension between all parties.^{Reference Reid, Williams and Burr63} They felt that people with eating disorders often lack motivation and adherence with treatment, with much of the drive for help-seeking and recovery coming from the families.^{Reference Grange and Gelman43,Reference Paulson-Karlsson and Nevonen46,Reference Colton and Pistrang47,Reference Zaitsoff, Pullmer, Menna and Geller48,Reference Offord, Turner and Cooper49,Reference Reid, Williams and Burr63} Therefore, some primary care professionals were reluctant to work with eating disorders,^{Reference Clinton, Bjork, Sohlberg and Norring51} with expressions of ‘frustration’,^{Reference Paulson-Karlsson and Nevonen46,Reference Zaitsoff, Pullmer, Menna and Geller48} ‘resentment’^{Reference Walker and Lloyd45} and ‘irritability and disgust’ in the physical comorbidities,^{Reference Walker and Lloyd45,Reference Colton and Pistrang47} considering eating disorders as being ‘low prestige’ compared with other illnesses,^{Reference Walker and Lloyd45} with some stating they ‘don't like’ or ‘don't want to work with them’.^{Reference Paulson-Karlsson and Nevonen46,Reference McMaster, Beale, Hillege and Nagy56} Other primary care professionals indicated that they just ‘don't’, or ‘don't want’ to screen for eating disorders,^{Reference Paulson-Karlsson and Nevonen46,Reference Offord, Turner and Cooper49,Reference Roots, Rowlands and Gowers55,Reference Winn, Perkins, Murray, Murphy and Schmidt57} as they find them time consuming or too complex,^{Reference Grange and Gelman43,Reference Paulson-Karlsson and Nevonen46,Reference Colton and Pistrang47,Reference Offord, Turner and Cooper49,Reference Rance, Moller and Clarke50,Reference Clinton, Bjork, Sohlberg and Norring51} or just preferred to diagnose eating disorders rather than manage their care and treatment.^{Reference Colton and Pistrang47,Reference Evans, Hat, Mond, Paxton, Quirk and Rodgers53,Reference Tierney60} Yet others were frustrated they ‘can't work’ with eating disorders,^{Reference Grange and Gelman43,Reference Walker and Lloyd45} expressing a wish to be trained in eating disorders, because their role in detecting eating disorders symptoms was important.^{Reference Roots, Rowlands and Gowers55,Reference Winn, Perkins, Murray, Murphy and Schmidt57}

Primary care professionals saw the lack of training and resources in eating disorders as a barrier^{Reference Grange and Gelman43} and felt that frustration caused negative attitudes that then impeded therapeutic relationships.^{Reference Grange and Gelman43} It was widely recommended that a well-validated universal screening protocol for eating disorders would build confidence in primary care settings.^{Reference Offord, Turner and Cooper49,Reference Rance, Moller and Clarke50,Reference Evans, Hat, Mond, Paxton, Quirk and Rodgers53,Reference Roots, Rowlands and Gowers55}

Primary care professionals insisted that the challenges of working with eating disorders and professional negative attitudes were associated with ‘clinical’ problems^{Reference Lindstedt, Neander and Gustafsson44} such as feeling unequipped to diagnose and intervene with eating disorders^{Reference Rance, Moller and Clarke50,Reference Winn, Perkins, Murray, Murphy and Schmidt57} because of a lack of eating disorder experience,^{Reference Grange and Gelman43,Reference Bannatyne and Stapleton65,Reference McMaster, Beale, Hillege and Nagy56,Reference McCormack and McCann58,Reference Reid, Williams and Burr63} knowledge/understanding,^{Reference Grange and Gelman43,Reference Lindstedt, Neander and Gustafsson44,Reference Offord, Turner and Cooper49,Reference McMaster, Beale, Hillege and Nagy56} and adequate training and skills.^{Reference Grange and Gelman43,Reference Walker and Lloyd45,Reference Colton and Pistrang47,Reference Offord, Turner and Cooper49,Reference Rance, Moller and Clarke50,Reference Clinton, Bjork, Sohlberg and Norring51,Reference Tierney60} They identified larger-scale ‘organisational’ problems^{Reference Clinton, Bjork, Sohlberg and Norring51} that eating disorders are considered specialist disorders and requiring specialised care.^{Reference Grange and Gelman43} However, they recognised that specialist care referrals are often unavailable or unobtainable;^{Reference Grange and Gelman43,Reference Colton and Pistrang47,Reference Offord, Turner and Cooper49} thus, primary care professionals were faced with challenges of trying to make referrals to inaccessible specialist treatment.^{Reference Offord, Turner and Cooper49,Reference Roots, Rowlands and Gowers55,Reference Reid, Williams and Burr63}

Ideal characteristics of care and treatment

Individuals with eating disorders and their family/friends said ‘one professional’ could make a real difference in eating disorder care and treatment.^{Reference Halvorsen and Heyerdahl54} This ‘good’ professional, regardless of whether they belonged to primary or secondary care services, was characterised as someone they can trust,^{Reference Sheridan and McArdle27,Reference Rosenvinge and Klusmeier30} and build a strong therapeutic relationship with,^{Reference Sampson, Cooper, Barbour, Polson and Wilson7,15,Reference Rie, Noordenbos, Donker and Furth22,Reference Linville, Brown, Strum and McDougal24,Reference Robinson, Mountford and Sperlinger25,Reference Boughtwood and Halse28,Reference Gulliksen, Epeset, Nordbo, Skarderud, Geller and Holte33} who is respectful and empathic.^{Reference Keel and Brown1,Reference Hay and Mond2,Reference Grave5,Reference Sampson, Cooper, Barbour, Polson and Wilson7,11,13,15,Reference Moher, Liberati, Tetzlaff and Altman17,Reference Popay, Roberts, Sowden, Petticrew, Arai and Rodgers18,Reference Snilstveit, Oliver and Vojikova19,Reference Rie, Noordenbos, Donker and Furth22,Reference Robinson, Mountford and Sperlinger25,Reference Gulliksen, Epeset, Nordbo, Skarderud, Geller and Holte33,Reference Dimitropoulos, Toulany, Herschman, Kovacs, Steinegger and Bardsley41} This ‘good professional’ needed to be available and consistent^{Reference Sampson, Cooper, Barbour, Polson and Wilson7,13,15,Reference Rie, Noordenbos, Donker and Furth22} and have a sufficient understanding,^{Reference Grave5,11,12,13,Reference Popay, Roberts, Sowden, Petticrew, Arai and Rodgers18,Reference Snilstveit, Oliver and Vojikova19,Reference Tierney21,Reference Clinton, Almlof, Lindstrom, Manneberg and Vestin23,Reference Gulliksen, Epeset, Nordbo, Skarderud, Geller and Holte33} knowledge and experience of eating disorders.^{Reference Keel and Brown1,Reference Clarke and Polimeni-Walker8,Reference Waller, Schmidt, Treasure, Marray, Aleyna and Emanuelli9,12,13,Reference Rie, Noordenbos, Donker and Furth22,Reference Robinson, Mountford and Sperlinger25,Reference Bravender, Elkus and Lange26} The ideal setting for this treatment to take place was in a safe and supportive environment – somewhere that feels ‘like home’,^{Reference Sampson, Cooper, Barbour, Polson and Wilson7,11,13,15,Reference Tierney21,Reference Rie, Noordenbos, Donker and Furth22,Reference Clinton, Almlof, Lindstrom, Manneberg and Vestin23,Reference Sheridan and McArdle27,Reference Boughtwood and Halse28,Reference van Ommen, Meerwijk, Kars, Elburg and Meijel29} considers the individual with eating disorders as a ‘whole person’,^{Reference Sampson, Cooper, Barbour, Polson and Wilson7,Reference Popay, Roberts, Sowden, Petticrew, Arai and Rodgers18,Reference Snilstveit, Oliver and Vojikova19,Reference van Ommen, Meerwijk, Kars, Elburg and Meijel29} and offers a ‘collaborative’ approach to treatment^{Reference Sampson, Cooper, Barbour, Polson and Wilson7,Reference Popay, Roberts, Sowden, Petticrew, Arai and Rodgers18,Reference Snilstveit, Oliver and Vojikova19,Reference Tierney21,Reference Linville, Brown, Strum and McDougal24,Reference Bravender, Elkus and Lange26,Reference Sheridan and McArdle27,Reference van Ommen, Meerwijk, Kars, Elburg and Meijel29,Reference Gulliksen, Epeset, Nordbo, Skarderud, Geller and Holte33,Reference Dimitropoulos, Toulany, Herschman, Kovacs, Steinegger and Bardsley41} that is ‘individualised and client-focused’^{Reference Popay, Roberts, Sowden, Petticrew, Arai and Rodgers18,Reference Snilstveit, Oliver and Vojikova19,Reference Tierney21,Reference van Ommen, Meerwijk, Kars, Elburg and Meijel29} offering consultative and directional care.^{Reference Waller, Schmidt, Treasure, Marray, Aleyna and Emanuelli9,11,Reference Gulliksen, Epeset, Nordbo, Skarderud, Geller and Holte33}

At the same time, the ‘good professional’ needed to remain authoritative, reflecting confidence and professionalism¹³ and setting meaningful and appropriate treatment goals.^{Reference Moher, Liberati, Tetzlaff and Altman17,Reference Boughtwood and Halse28} It is suggested that a combination of ‘autonomy and direction’ equals ‘balance and success’ in eating disorder treatment.¹¹ Some professionals also supported this ideal system, suggesting that although eating disorder experience, skill and knowledge are important in the treatment of eating disorders, building strong relationships with individuals with eating disorders and their family/friends, and delivering care holistically can have a greater impact of helpfulness than any type of treatment provided.^{Reference Grange and Gelman43,Reference Honey, Boughtwood, Clarke, Kohn and Madden59,Reference Cohn61,Reference Haigh and Treasure62}

Specialised and/or complex? – So, who's responsible for eating disorders?

One of the issues raised by non-eating disorder specialists was that eating disorders is both specialised and complex in nature.^{Reference Honey, Boughtwood, Clarke, Kohn and Madden59,Reference Cohn61} Eating disorders are considered ‘rare, chronic and require intense care, high levels of treatment and high demand from HPs [health professionals]’.^{Reference Grange and Gelman43} Yet, it was regularly argued that eating disorder treatment should reflect its specialist need, and the best place for individuals with eating disorders is in specialist care^{Reference Grange and Gelman43} that provides the time and expertise^{Reference Grange and Gelman43,Reference Cohn61} to build supportive relationships. Similarly, individuals with eating disorders and their family/friends perceived specialist eating disorder care as the ‘best’ or ‘better’ treatment for eating disorders,^{Reference Tierney, Goss and Fox6,Reference Sampson, Cooper, Barbour, Polson and Wilson7,10,Reference Moher, Liberati, Tetzlaff and Altman17,Reference Snilstveit, Oliver and Vojikova19,Reference Linville, Brown, Strum and McDougal24,Reference Nilsson and Hagglof34,Reference Zugai, Stein-Parbury and Roche35,Reference Fox and Diab37,Reference Grange and Gelman43} providing better understanding and knowledge of eating disorders,^{Reference Hay and Mond2,Reference Crow, Swanson, Raymond, Specker, Eckert and Mitchell3,Reference Waller, Schmidt, Treasure, Marray, Aleyna and Emanuelli9, 20,Reference Robinson, Mountford and Sperlinger25,Reference Grange and Gelman43} empathy^{Reference Crow, Swanson, Raymond, Specker, Eckert and Mitchell3,Reference Waller, Schmidt, Treasure, Marray, Aleyna and Emanuelli9,Reference Robinson, Mountford and Sperlinger25} and personal recognition.^{Reference Popay, Roberts, Sowden, Petticrew, Arai and Rodgers18} Unsurprisingly, many non-specialist health professionals felt that they ‘should’ or ‘would rather’ refer individuals with eating disorders on to these services,^{Reference Grange and Gelman43,Reference Roots, Rowlands and Gowers55,Reference Winn, Perkins, Murray, Murphy and Schmidt57} and many individuals with eating disorders and their family/friends wanted this ‘best’ treatment too.^{Reference Tierney, Goss and Fox6,Reference Sampson, Cooper, Barbour, Polson and Wilson7,10,Reference Moher, Liberati, Tetzlaff and Altman17,Reference Snilstveit, Oliver and Vojikova19,Reference Linville, Brown, Strum and McDougal24,Reference Nilsson and Hagglof34,Reference Zugai, Stein-Parbury and Roche35,Reference Fox and Diab37,Reference Grange and Gelman43}

However, ‘referring on’ often was to under-resourced specialist service struggling to respond to demand.^{Reference Snilstveit, Oliver and Vojikova19,Reference Robinson, Mountford and Sperlinger25,Reference Zugai, Stein-Parbury and Roche35,Reference Grange and Gelman43} Eating disorder services created limited access,^{Reference Tierney21,Reference Rosenvinge and Klusmeier30,Reference Gulliksen, Epeset, Nordbo, Skarderud, Geller and Holte33} geographical barriers,^{Reference Tierney21} long waiting lists and delays,^{Reference Keel and Brown1,Reference Snilstveit, Oliver and Vojikova19,Reference Tierney21,Reference Rosenvinge and Klusmeier30} rigid admission rules based on single treatment modalities and eating disorder physical traits.^{Reference Tierney21,Reference Robinson, Mountford and Sperlinger25,Reference Rosenvinge and Klusmeier30,Reference Gulliksen, Epeset, Nordbo, Skarderud, Geller and Holte33} Lower body mass indexes took priority,^{Reference Bravender, Elkus and Lange26,Reference Rosenvinge and Klusmeier30} and referrals were only accepted for very serious cases.^{Reference Keel and Brown1,Reference Tierney, Goss and Fox6,Reference Tierney21,Reference Robinson, Mountford and Sperlinger25,Reference Rosenvinge and Klusmeier30} Furthermore, specialist eating disorder care provided no guarantee of treatment even after gaining access,^{Reference Rosenvinge and Klusmeier30} with the risk of losing a place if another patient took priority^{Reference Robinson, Mountford and Sperlinger25,Reference Rosenvinge and Klusmeier30} and immediate discharge occurring after weight restoration, with little if any aftercare.^{Reference Rosenvinge and Klusmeier30}

Eating disorders requires a multidisciplinary approach and team involved, including a range of primary and secondary care professionals,^{Reference Grange and Gelman43,Reference Evans, Hat, Mond, Paxton, Quirk and Rodgers53,Reference Cohn61} with the inclusion of families.^{Reference Evans, Hat, Mond, Paxton, Quirk and Rodgers53} However, this multidisciplinary model could suffer misconceptions, such as the assumption of professionals that ‘some treatment is better than none’.^{Reference Grange and Gelman43}

Out-patient care^{10,11,Reference Zugai, Stein-Parbury and Roche35} was favoured by some individuals with eating disorders as allowing a consultative and collaborative approach to treatment control,¹¹ and when delivered by a professional with sufficient eating disorder expertise, family/friends tended to feel that out-patient care is the most beneficial, compared with any other treatment.^{Reference Zugai, Stein-Parbury and Roche35} To others, out-patient treatment was an unsuccessful, unsuitable or unskilled option.^{Reference Hay and Mond2,Reference Moher, Liberati, Tetzlaff and Altman17}

Medical general ward admissions were reported by all professionals, individuals with eating disorders and families as the most negative setting for eating disorders and the ‘most inappropriate location’, ‘unsuitable and unhelpful’ for individuals with eating disorders, making them feel isolated and treated by general ward staff who lacked skill and specialist eating disorder knowledge.^{Reference Keel and Brown1,Reference Hay and Mond2,Reference Zipfel, Giel, Bulik, Hay and Schmidt4,Reference Sampson, Cooper, Barbour, Polson and Wilson7,Reference Moher, Liberati, Tetzlaff and Altman17,Reference Nilsson and Hagglof34,Reference Swain-Campbell, Surgenor and Snell40,Reference Grange and Gelman43,Reference Zaitsoff, Pullmer, Menna and Geller48} Professionals working on these medical general wards reported difficulties delivering care to individuals with eating disorders because of their ‘deceitful and non-compliant’ personalities^{Reference Zaitsoff, Pullmer, Menna and Geller48} and reported a ‘struggle to understand the complex disorder’^{Reference Honey, Boughtwood, Clarke, Kohn and Madden59} that challenged their nursing values, often causing more harm than good to the patients with eating disorders.^{Reference Zaitsoff, Pullmer, Menna and Geller48,Reference Honey, Boughtwood, Clarke, Kohn and Madden59}

Overall, specialist eating disorder care was considered the gold standard in eating disorder treatment. Unfortunately, this was not only often unobtainable, but emphasis as a ‘best’ care ultimately undermined other agencies, treating them as mere stepping stones to specialised services rather than potentially beneficial alternatives. It appeared to be the characteristics and techniques used – collaborative and patient-centred care that is knowledgeable yet sensitive to issues of control and ambivalence – that determined positive outcomes. Appendix 3 outlines the key points from theme 2.

The weight versus well-being paradigm

Perceived oppositions between the physical and emotional aspects of eating disorder treatment and recovery were identified. There is an opposition between the ‘rarity’ and ‘recovery’ aspects of eating disorders, as the prospect of recovery from eating disorders is often unknown, underestimated or overestimated among health professionals.^{Reference Lindstedt, Neander and Gustafsson44,Reference Offord, Turner and Cooper49,Reference Evans, Hat, Mond, Paxton, Quirk and Rodgers53,Reference McMaster, Beale, Hillege and Nagy56} Anorexia nervosa was sometimes viewed as chronic with no recovery prospects^{Reference Lindstedt, Neander and Gustafsson44,Reference Offord, Turner and Cooper49,Reference Schoen, Lee, Skow, Greenberg, Bell and Wiese52,Reference McMaster, Beale, Hillege and Nagy56} whereas the prevalence and severity of bulimia nervosa was greatly underestimated.^{Reference Lindstedt, Neander and Gustafsson44,Reference Offord, Turner and Cooper49,Reference Evans, Hat, Mond, Paxton, Quirk and Rodgers53} In contrast, for individuals with eating disorders and their family/friends, the expectation of recovery drove help-seeking and treatment.^{Reference Keel and Brown1,14,Reference Mitchell, Burridge, Zhang, Donald, Scott and Dart16}

Another opposition occurred between the professional and family members focusing on the ‘visible signs of eating disorders’ seeing physical status as the most valuable measure of treatment and recovery^{Reference Zipfel, Giel, Bulik, Hay and Schmidt4,Reference van Ommen, Meerwijk, Kars, Elburg and Meijel29} as compared with individuals with eating disorders focusing on psychological markers such as improved ‘well-being’ and feeling ‘normal’.^{Reference Keel and Brown1,Reference Clarke and Polimeni-Walker8,Reference Popay, Roberts, Sowden, Petticrew, Arai and Rodgers18 ,20,Reference Clinton, Almlof, Lindstrom, Manneberg and Vestin23,Reference van Ommen, Meerwijk, Kars, Elburg and Meijel29,Reference Rosenvinge and Klusmeier30} Overall, this lack of clarity resulted in a weight versus well-being paradigm and constituted a considerable barrier at the eating disorder healthcare interface frequently described by individuals with eating disorders and their family/friends as ‘too much focus on food and weight’,^{Reference Keel and Brown1,Reference Hay and Mond2,Reference Zipfel, Giel, Bulik, Hay and Schmidt4,Reference Sampson, Cooper, Barbour, Polson and Wilson7,15,Reference Snilstveit, Oliver and Vojikova19,Reference Clinton, Almlof, Lindstrom, Manneberg and Vestin23,Reference Robinson, Mountford and Sperlinger25,Reference van Ommen, Meerwijk, Kars, Elburg and Meijel29,Reference Rosenvinge and Klusmeier30,Reference Zugai, Stein-Parbury and Roche35,Reference Swain-Campbell, Surgenor and Snell40} reported in both primary and secondary care.^{Reference Rosenvinge and Klusmeier30} There is further conflation of completion of treatment with recovery,^{Reference Schoen, Lee, Skow, Greenberg, Bell and Wiese52,Reference Halvorsen and Heyerdahl54} with professionals measuring outcomes based on ‘completion’ of treatment, whereas individuals with eating disorders felt recovery should be based on ‘doing well’.^{Reference Evans, Hat, Mond, Paxton, Quirk and Rodgers53}

Power relations versus collaboration

Oppositions existing within the weight versus well-being paradigm were also reported as part of a ‘power system’^{Reference Zipfel, Giel, Bulik, Hay and Schmidt4,Reference Clarke and Polimeni-Walker8,Reference Rosenvinge and Klusmeier30} throughout the eating disorder pathway, to the detriment of good practice.^{Reference Clarke and Polimeni-Walker8} Early in help-seeking and diagnosis, the overemphasis on ‘weight and food’ triggered a ‘drive’, because to ‘eat less food and lose more weight’ won individuals priority for treatment in specialist eating disorder services.^{Reference Rosenvinge and Klusmeier30} However, once entry was gained to eating disorder services, opposition between individuals with eating disorders and professionals continued, with healthcare professionals (for example secondary care staff in an in-patient unit) attempting to ‘hold all the power’.^{Reference Zipfel, Giel, Bulik, Hay and Schmidt4} Some in-patient units used ‘reward systems’ based on penalties and privileges,^{Reference Clarke and Polimeni-Walker8,15,Reference Gulliksen, Epeset, Nordbo, Skarderud, Geller and Holte33} making individuals with eating disorders feel that professionals ‘take all the power’.¹⁵

For some individuals with eating disorders, specialist eating disorder treatment was considered ineffective as this undermined engagement^{Reference Zipfel, Giel, Bulik, Hay and Schmidt4,Reference Sampson, Cooper, Barbour, Polson and Wilson7} leaving them disempowered^{Reference Zipfel, Giel, Bulik, Hay and Schmidt4} distressed^{Reference Keel and Brown1,Reference Moher, Liberati, Tetzlaff and Altman17,Reference Popay, Roberts, Sowden, Petticrew, Arai and Rodgers18,Reference Robinson, Mountford and Sperlinger25,Reference van Ommen, Meerwijk, Kars, Elburg and Meijel29} and patronised,^{Reference Sampson, Cooper, Barbour, Polson and Wilson7,Reference Gulliksen, Epeset, Nordbo, Skarderud, Geller and Holte33} in a system that was too restrictive, structured and strict.^{Reference Popay, Roberts, Sowden, Petticrew, Arai and Rodgers18,Reference Tierney21,Reference Clinton, Almlof, Lindstrom, Manneberg and Vestin23} This resulted in loss of personal control, identity and normality.^{Reference Keel and Brown1,Reference Hay and Mond2,Reference Sampson, Cooper, Barbour, Polson and Wilson7,Reference Clarke and Polimeni-Walker8,15,Reference Moher, Liberati, Tetzlaff and Altman17,Reference Snilstveit, Oliver and Vojikova19} Some individuals with eating disorders described these battles as triggering power systems, where rigid rules and unfair power relations forced individuals with eating disorders to become rebellious or deceitful, compelling them to ‘put on an act’^{Reference Clinton, Almlof, Lindstrom, Manneberg and Vestin23} as the ‘perfect patient’^{Reference Clarke and Polimeni-Walker8} to comply, resulting in an opposing identity of the rebel.^{Reference Sheridan and McArdle27} This is reported as being detrimental to the health and recovery of the person with eating disorders^{Reference Clinton, Almlof, Lindstrom, Manneberg and Vestin23,Reference Sheridan and McArdle27} as it entrenched eating disorder symptoms and increased vulnerability.^{Reference Moher, Liberati, Tetzlaff and Altman17,Reference van Ommen, Meerwijk, Kars, Elburg and Meijel29} For other individuals with eating disorders, restrictive treatment could be a ‘safe haven’.^{Reference Popay, Roberts, Sowden, Petticrew, Arai and Rodgers18} The loss of control and normality were considered positive^{Reference Keel and Brown1,Reference Waller, Schmidt, Treasure, Marray, Aleyna and Emanuelli9,15,Reference Moher, Liberati, Tetzlaff and Altman17,Reference Popay, Roberts, Sowden, Petticrew, Arai and Rodgers18} because it helped set boundaries and relinquish control,^{15,Reference Gulliksen, Epeset, Nordbo, Skarderud, Geller and Holte33} relieving individuals of responsibility and allowing them to regain control ‘elsewhere’ as treatment progresses.^{Reference Popay, Roberts, Sowden, Petticrew, Arai and Rodgers18} However, regaining control was problematic after discharge, especially if there was little aftercare.^{15,Reference Mitchell, Burridge, Zhang, Donald, Scott and Dart16,Reference Moher, Liberati, Tetzlaff and Altman17,Reference van Ommen, Meerwijk, Kars, Elburg and Meijel29}

Professionals (for example secondary care staff in an in-patient unit) felt that too much authoritative control in the eating disorder treatment settings caused considerable stress for people with eating disorders and their families^{Reference Haigh and Treasure62} and obstructed trusting relationships, causing rebellious outbursts among those with eating disorders.^{Reference Honey, Boughtwood, Clarke, Kohn and Madden59} For professionals, judiciously managing control was crucial,^{Reference Honey, Boughtwood, Clarke, Kohn and Madden59,Reference Haigh and Treasure62} without ‘enforcing’ it and triggering ‘power in play’ between the patient with eating disorders and professionals with resultant ‘mutual mistrust’.^{Reference Zaitsoff, Pullmer, Menna and Geller48,Reference Honey, Boughtwood, Clarke, Kohn and Madden59} Family and friends of individuals with eating disorders reflected that shifting their role in the home ‘from power and authority to one of support and encouragement’ improved outcomes.^{Reference Dimitropoulos, Toulany, Herschman, Kovacs, Steinegger and Bardsley41} Family and friends felt all sides should work together as a team^{Reference Federici and Kaplan36} ‘on the same page’,^{Reference Dimitropoulos, Toulany, Herschman, Kovacs, Steinegger and Bardsley41} with all affected by eating disorders mutually involved in treatment and the recovery process.^{Reference Federici and Kaplan36,Reference Dimitropoulos, Toulany, Herschman, Kovacs, Steinegger and Bardsley41} Therefore, it was important to not remove all control and power from those affected by eating disorders¹¹ and professionals should adopt directional not authoritative stances^{Reference Waller, Schmidt, Treasure, Marray, Aleyna and Emanuelli9} and be firm yet consistent.¹⁵ In eating disorders, if power relations were distributed more fairly in the eating disorder care setting, the ultimate wish of all parties for more room for greater collaboration in eating disorder treatment would result.^{Reference Popay, Roberts, Sowden, Petticrew, Arai and Rodgers18,Reference Tierney21,Reference Escobar-Koch, Banker, Crow, Ringwood, Smith and Furth39,Reference Dimitropoulos, Toulany, Herschman, Kovacs, Steinegger and Bardsley41} Appendix 4 outlines the key points from theme 3.

Figure 2 outlines the key points in a diagram format of the three dominant themes and their additional subthemes

Fig. 2 Summary of themes.