Integration of physical and mental health services for children and young people with eating disorders and functional symptoms: a qualitative study of staff and parents’ perspectives

Patient and Public Involvement

We convened a PPI Advisory Group (PPIAG) for this study comprising four parents of children and young people affected by eating disorders and functional symptom disorders. The group were recruited via the parents network related to the hospital that was developing the services being researched. The PPIAG met four times during the lifetime of the study, and input was also sought by email on three separate occasions. PPI commenced after the decision was made to undertake the study. The PPIAG were involved in the research design, development and iteration of participant information resources and interview topic guides, research management and troubleshooting, interpretation of the findings and key messages, and writing and dissemination of the findings. PPI input has been pivotal to ensure that parents and families views are heard in the design and implementation of new pathways and when evaluating them.

Research questions

Ethical approval

The study was approved by the East Midlands Nottingham 1 Research Ethics Committee on 25 January 2023 (IRAS ID 317213).

Setting

The setting is a service redevelopment that comprises the building of a new children’s hospital in a region of England. This is an ongoing process that began in 2017 and is scheduled to be completed in 2028. It involves services provided by one acute National Health Service (NHS) trust and one MH trust, and comprises a large regional teaching hospital and tier 4 MH services centers for CYP and their families. There will also be partnerships with the local university, and research facilities and academic work will be fully integrated into the new building.

The proposed changes to services for CYP with the new children’s hospital represent a system change whereby PH and MH services will be co-located to facilitate better integration between the two. Under the current system, inpatient MH services are managed by MH trust and are located in a series of buildings that are separate from the acute hospital. Some staff members from the MH team worked in the acute trust.

Study design

Qualitative interviews were conducted with 15 staff stakeholders working across different levels of the affected services, including senior project leads and clinical staff (Table 1), and 10 parents of CYP who currently or recently received help from existing services for either ED or FS (Table 2).

Data

Topics covered in the interviews are described in Table 3. The interview topic guides are available from: https://doi.org/10.17605/OSF.IO/CVP6D¹⁴.

Participant recruitment and data collection

Staff were identified via the study’s project advisory group, who contacted clinical staff working in relevant services and asked permission to share their contact details with the research team. One member of the team contacted them via email.

The initial recruitment of parents was via the hospital project engagement lead, who emailed an invitation to participate to parents on their contact list, specifically asking for participation from parents of CYP with either ED or FS. This resulted in the recruitment of three parents, and subsequent recruitment rounds were undertaken by clinicians working directly with ED and FS families, resulting in an additional seven parents being recruited.

All interviews were conducted via Teams or Zoom.

Consent

Written consent was obtained from participants prior to interview.

Analysis approaches and conceptual framework

Each interview transcript was first analyzed deductively based on the themes identified through the research questions and interview guides. Inductive coding was applied when participants described events or experiences that had not been specifically addressed or anticipated through the interview guide. The final analysis organized the themes within the Consolidated Framework for Implementation Research (CFIR)¹⁵, which has been widely used to assess potential barriers and facilitators within local settings. The CFIR outlines five domains that are important for service implementation: innovation, outer setting, inner setting, individuals, and implementation process. It can be used for completed service implementation as well as implementation in processes, as in the current study.

Innovation

Innovation in this context refers to the intended service redesign, which involves co-location and integration of PH and MH services with the anticipated implementation of more integrated services between the two. This construct was explored in terms of perceived barriers, facilitators, and expected impact on services. Drivers for change were both practical, as MH inpatient services were losing their physical spaces over the coming years due to land being sold or leases not being renewed, and aspirational to deliver better integrated services. It was anticipated that co-locating services in the new children's hospital would facilitate integration, as both formal and informal contact between staff working in different sectors could occur more easily.

“So, integration to me is assessing all the child’s needs appropriately and then bringing the services around to meet those needs, and so, treating the child as an integrated system as opposed to bits of a system. “ (STA16; Psychiatrist and Project Lead)

"I’ve been told that it’ll be in the kind of same space as the physical health wards as well. Thus, there will be many more types of mixing and matching with other staff members. So, it will kind of force that works together even more so, because there are no barriers, walls, and doors." (STA03; Mental health nurse)

Staff and parents saw the potential of integrated PH and MH services to reduce stigma, particularly for young people with FS. Involving MH services early in the FS pathway as a routine or normal part of services was felt to lessen the risk of CYP and families perceiving these services to be a last resort when all other options had been exhausted. It was also anticipated to reduce the risk of over-investigation of CYP with FS and make the process more efficient. Under the current system, CYP with FS are often described by both staff and parents as being passed from one service to the next, with little interaction between the two.

"You know, that’s why I think an integrated model would be so much better because then parents do not have to just feel like, oh no, there’s nothing really wrong with my child, it’s just like, you know it’s the child being silly, basically." (PACA02: mother of son, aged 9 years, FS)

The perceived impact on CYP with f ED was not as straightforward. There was a lack of clarity over the extent of service co-location, with some staff believing that there were plans for mixed PH and MH wards, while others thought they would remain separate. The potential of mixing patients with and without ED was seen as beneficial by some who thought it might reduce competitive behavior (e.g., weight loss, restricting food), which they believed was often seen among inpatients in specialist wards for anorexia. Others, including some parents, were concerned that it might do the opposite (e.g., competing in ‘who is the most ill’).

“I think some of the concern is the competitive nature of an eating disorder, is if you’re mixing them with other children who are unwell, that kind of want to be poorly and need to be sicker than the other children. So, if they’re oncology and they have got no hair or they have got NG tubes or crutches, whatever they have got, if they have got peg feeds. If they’re integrating it, because of the nature of the eating disorder, it could mean that they want to be more poor before they get better." (STA04; Mental health nurse)

Other parents reflected on the positives of a more integrated service for CYP with ED, which were framed around understanding ED as a physical illness as well as a psychiatric condition:

“On the one hand, it’s really good to drill down on anorexia being an illness requiring hospitalization in the same way as if you had a hole in the heart, or if you had a broken leg – I think that’s really important. Equally and contradictorily, they marry together. It is really important to view eating disorders as something that needs a more holistic approach, which is what the [eating disorder unit] offers and what the new hospital will offer even more.” (PACA04; Father of daughter, aged 12 years, ED).

Reflecting the ongoing nature of this reorganization, many of the staff reported feeling unclear about exactly what the new model of service delivery would look like in practice and thought decisions to date have focused more on buildings and design than on service provision and care pathways. Hence, the decision regarding a model of co-location of services appeared more developed than the integrative aspects, and no clear definition of ‘integration’ has been proposed.

"I think they will put the wards in and then slowly integrate between there. I do not know if they will link nurses in both wards to build relationships. I cannot see there being anything brand or brand new, but they might do. I do not think they have decided yet; they just want to get everyone in there then start the integration." (STA04; Mental health nurse)

Outer setting

The outer setting here refers to the wider setting within which the new hospital exists, the linkages between trusts, and between acute and community services. The current way of working represents a model in which different parts of the services for young people are managed by different types of trusts, with limited interaction between PH and MH for inpatient services. There were also varying degrees to which staff felt that engagement and collaboration with community services worked under the current system, with some staff expressing that once discharged from inpatient services, there was little, if any, continued patient contact.

“I think there is disconnect between the tier 4 beds which are run by NHS England and seem to be staffed almost completely independently of the community team. I think the community team seems to be completely independent of tier 4. I think there needs to be a good in-reach outreach. And I do not think there is locally." (STA11, GP)

Some parents felt that this siloed work resulted in being passed from one service to the next without continuity, particularly when assessment and treatment had been initiated in a family’s hometown and the child subsequently referred to the services described here. Some parents also felt that they had not taken their concerns seriously in the initial contact with a GP and had to fight for further referral.

"The GP I was a bit disappointed because she was like okay, it’s a long form and it’s a long wait for CAMHS and to refer. I said, go ahead, and refer to. I would like it on record and begin the process for the referral, start the process; however, long it takes I want to get into the system.” (PACA01: mother of the daughter with ED).

"I don’t think the GP had much urgency. This was not good, looking back. However, what would these signs need to be? I don’t know. For them to do something different." (PACA11; mother of son with ED)

Inner setting

This construct refers to the immediate settings for service re-design, the acute trust, and the MH trust involved, and the impact re-design was perceived to have on staff and services within those settings. While staff members were broadly supportive of the new hospital and the prospect for more integrated PH and MH service provision, some were concerned about losing aspects of the current service. Several of the staff from the PH side were enthusiastic about the prospect of gaining better physical spaces designed with the needs of the CYP in mind, but staff on the MH side were concerned about losing their current amenities precisely because they had been designed to best support the CYP they cared for.

"I think- [acute trust] were very much like, no, meals should be provided. And then [mental health trust] were like, well, we think family should be able to cook their own meals and serve their own meals. From a physical health perspective, you know, it was well, what about hygiene, you know, and safety? You know, if you think of oncology and immunocompromised you know, things like that. They think more from that perspective. While you know, from a mental health side, it’s like, well, that’s more- you know, that’s more normal from a family perspective." (STA05; Allied Health)

Many staff members reported that the planning to date had focused more on the physical space of the new hospital than on models of working. While project leads wanted to get the hospital design signed off so that the building could commence, many of the concerns raised by MH staff were that the implementation of integrated working could potentially impact layouts and space sharing and were not felt to have been resolved. There was also a lack of clarity regarding how the organizational leadership of the new, integrated services would be managed: who would be in charge, whether the hospital would operate under the two existing trusts, or whether a new trust would need to be established. Several staff members expressed uncertainty over the feasibility of achieving a truly integrated way of working, as opposed to having teams working alongside each other.

"I think it’s exceptionally tricky by having two organizations. Sometimes, understand who is leading on this. And I think throughout the project to date, and I know it’s changing slightly going forward, but you know there’s always maybe been this view of, okay so we need one person from [mental health trust] and one person from [acute trust]. The problem with this is, who calls the shots? Who makes the decisions? And sometimes that’s really unclear as to who’s driving what." (STA13: Lead Nurse)

"I think if they could have created a single structure where there would be an overall chief executive and overall board and set of senior leadership team executives running it, it would stand much greater chance of being fully integrated. Because I think having two separate streams like that, they’re still going to be potential for us and them with, you know, particularly at risk mental health, I think, because it always tends to take the lower, you know, the less important position.” (STA08; Psychiatrist).

MH staff at all levels worried about being subsumed within the PH model of working, losing autonomy, and potentially becoming more marginalized. The greater concern observed among MH staff might be partially explained by the fact that many believed that existing services were working well, and so the reorganization of services were perceived to bring fewer benefits in this sector.

MH staff also expressed concern relating to the prospects of mixed wards and wards with mixed PH and MH rooms, which they did not feel had been adequately addressed. This reflected a concern about losing beds to other services and about the suitability of caring for mentally unwell young patients in the same space as those attending for PH concerns. It was felt that this might be distressing to witnesses for young people without experience or understanding of mental illness.

"The amount of risks that sit on those wards when they’re not mixing with young people with physical health needs, are already enormous, you know, there’s so much to think about. So, it is really going to have to be thought very carefully around the kind of mixing element. From a safeguarding perspective.” (STA03; Mental Health Nurse)

Parents of CYP with ED also worried about breaches in confidentiality if their children were to be treated in mixed PH and MH wards and potentially coming into contact with peers who were unaware of their condition.

“The reality is that they may face some prejudice, and if they face prejudice on a daily basis, then that would be incredibly unpleasant for them. I am just trying to imagine what it would be like a mental health patient, and I suppose that’s something to be really, really aware of. Because of course where [daughter] is at the moment [residential ED unit], you know, there’s not a sense of embarrassment, there’s a sense of acceptance.” (PACA08; Mother of daughter, aged 17 years, ED)

Like the staff (above), parents expressed concern that the new model might disrupt family dynamics if provision for families would be reduced compared to current services, such as access to kitchens for family cooking. This concern was expressed particularly by parents of CYP with ED who had experienced the existing Tier 4 ED services. The potential loss of family kitchens in particular was considered problematic, as it was seen to help families of CYP with ED to normalize cooking and eating in a family context, within a therapeutic setting.

“There was some talk as to whether there would still be a kitchen there, which I think would– I don’t know, I think it is quite essential that parents can cook their own food and the children can as well, because that is what differentiates it from the older units. Older units are forced to eat what comes in. I think the kitchen is quite an important part of looking after the children there.” (PACA04; Father of daughter, aged 12 years, ED).

Individuals

This construct explores the roles of staff in existing services and how proposed changes might impact these roles. In existing services, dedicated liaison personnel are seen as invaluable in promoting effective collaboration between the PH and MH teams. This was reiterated by the experiences of some of the PH teams who until recently had had access to a liaison psychiatrist who had worked closely with them to provide a link with the MH team. The impact of this role was universally felt to have been positive, as it facilitated collaboration between teams.

“This is a role that the liaison psychiatrist has covered brilliantly over the last five years. You know, we felt–all of us felt sensitized to mental health, empowered, and we felt safer, you know, with these patients. More at ease, instead of reading the admissions, “oh my goodness”, you know, ”we’ve got a child coming with eating disorder, low weight and I don’t know, self-harming”. And it was like, “oh my goodness, how we going to do that?” Now, we have a structure in place, and we know what to do. And we know where to look at and who to call if things are escalating.” (STA01: pediatrician)

PH staff were also concerned that they did not have training to manage young people with MH problems, and while some saw this as an opportunity for professional development and learning new skills, many worried about being inadequately prepared. Furthermore, some were reported to see the proposed model as a threat to their professional roles and identities.

"I did have a nurse who I’ve known for a long time say to me: ‘But I didn’t train to look after mental health. I do not want to be a mental health nurse. I want to look after my children and families are coming into the hospital. .. Integration to me, it is not something that is attractive. I do not know how you are going to prepare me for it, and if I want to say no, can I say no? (STA09; Senior Nurse)

The need for staff training was discussed almost exclusively in terms of the training required by PH staff to better understand MH aspects and not vice versa. Similarly, when staff reported having either received or provided training, it was always in this direction. This was also reflected in the enthusiasm shown by many PH staff for expanding their skill set with a better understanding of MH issues, whereas more training or experience in PH issues did not appear to be perceived as a need among MH staff.

"I’ve not had formal sort of more mental health training. So, you know, when it comes to... and I think it’s the things that everyone worries about you know, saying the wrong thing. “ (STA05, Allied Health)

Implementation process

The implementation process refers to the process of developing, designing, and implementing a new way of working once the children’s hospital is operational. The current service redevelopment was initiated by a project management team, including one psychiatrist and two pediatricians after several failed attempts at getting a separate children’s hospital built within the region. Early response from hospital management to the suggested plans were reported to be ‘lukewarm,’ in large part due to previous failed attempts at realizing the building of a children’s hospital. This hesitancy focused solely on the building of the hospital and not on the proposed integration of PH and MH services. Initially, considerable time was spent convincing senior managers of the viability of the project and drumming support on the ground. This involved engaging the clinical staff in conversations about the potential benefits of a new hospital, which would co-locate PH and MH services to help further integration. As funding was secured, these conversations evolved into more formal meetings and processes for involving and eliciting feedback from frontline staff, CYP, and their families.

One facilitating factor in this process was the enthusiasm and engagement of the project leads and local advocates. Within local teams, having at least one person who attended meetings and could engage the rest of their team was seen as crucial for buy-in by frontline staff. This resulted in multiple roles being undertaken by some senior staff, who would act both as liaisons between the project team and local team, and as advocates for their profession within project development meetings.

"So my role really involves working across the whole project. Thus, working across the realms of physical and mental health and coming at from a nursing perspective. Thus, engaging with many of our clinical teams in all their different settings to ensure that they are aware of all the discussions involved when we are thinking about pathway development or design, that we are always able to articulate our colleagues’ voices. So as lead nurses, you know, we will do that outreach work, but then we will be kind of leading some of those voices in meetings to get the points across." (STA13: Lead nurse)

Clinical staff reported varying levels of involvement in the project, mostly through dedicated meetings organized by project leads where plans were presented and feedback was sought. Several referred to a certain amount of ‘consultation fatigue’ due to the lengthy process that stretched out over several years, and some were only consulted via their managers who would report back from meetings to their team.

"I think it’s quite ambiguous sometimes for the people participating, because they are not quite sure where we’re going to get to. However, every time we get to the next level of the design, they are comforted by the fact that they can see it progressing" (STA17; Project Lead).

A key part of the project involves a dedicated program of work focused on involving young people and families in the service reorganization process, which involved workshops, focus groups, and continuous updates.

“So, there have been a number of what I guess you’d call “focus groups” particularly with children, in a more creative and playful way where there is blue-sky thinking and they’re designing what it might look and feel like, with their families." (STA17; Project Lead).

One of the parents we spoke to have responded to the survey as part of this process, and another was working with the engagement, leading to the development of a podcast for the project. Others spoke of sharing their experiences through conversations, like their current interviews, as their way of contributing to thinking and learning.

Limitations

This study assessed the progress to date in an ongoing process of service redesign and, as such, can only draw limited conclusions about the impact of integrated PH and MH services for CYP with ED and FS. It also draws on a limited number of staff and parent perspectives, and greater input from parents of CYP with FS in particular would have been desirable. Future research should attempt to capture these voices and seek input from the CYP themselves. Nonetheless, we have explored some key concerns among PH and MH staff with regard to this type of service redesign.