Participants
A total of 34 participants took part in the study, with a mean age of 43.53 years (SD = 11.10) and a mean of 14.00 years (SD = 8.81) of experience. Three broad categories of professionals participated: primary care workers (e.g., general practitioner, home health nurse,…), mental health workers (e.g., psychotherapist, psychiatrist,…) and social workers (e.g., children and youth services, community services,…). Sample characteristics are displayed in Table 1.
Table 1
Demographic characteristics of participants.
| | Urban | Rural | Total |
| | FGD1 | FGD2 | Interviews | FGD3 | FGD4 | |
| Setting | | | | | | |
| Primary care | 1 | 1 | 0 | 1 | 4 | 7 |
| Mental health | 4 | 0 | 2 | 1 | 1 | 8 |
| Social work | 4 | 7 | 0 | 3 | 5 | 19 |
| Characteristics | | | | | | |
| Age (mean) | 47.00 | 42.88 | 32.00 | 47.20 | 41.40 | 43.53 |
| Female/Male | 7/2 | 7/1 | 1/1 | 5/0 | 9/1 | 29/5 |
| Total number | 9 | 8 | 2 | 5 | 10 | 34 |
Findings
Five themes emerged: (1) socio-demographic determinants and mental disorder characteristics associated with UMHNs; (2) attitudinal barriers associated with UMHNS; (3) structural barriers associated with UMHNs; (4) consequences of UMHNs; and (5) recommendations for meeting UMHNs.
Theme 1: Socio-demographic determinants and mental disorder characteristics associated with UMHNs
UMHNs are overrepresented in some groups, due to several socio-demographic and disorder-related characteristics. A first major risk factor is poverty. Participants state that poverty hinders help-seeking because mental health is subordinate to basic needs such as housing and food; and that psychotherapy is too often too expensive. In addition, participants mention difficulties distinguishing mental health needs from rather social needs, but acknowledge both may be intertwined.
“I don’t think it’s about certain groups, but more… across all groups, when there is not enough financial capacity, I don’t think there is more necessity for this or that problem. Once people lack financial resources, it transcends all groups.” (psychotherapist, FGD1)
People with an ethnic minority background are at risk for UMHNs. Cultural differences in taboo and stigma and a lack of trust in professional care are identified as hindering factors for help-seeking in this group. People with a non-western background often present with indistinct physical complaints actually underlying mental distress. Also language plays a major role. Several participants expressed difficulties working with interpreters, and not speaking one of the national languages is often an exclusion criterion in mental health care. Participants voiced concerns about severe trauma amongst the increasing number of refugees.
“What we see in general practice is that people present with physical complaints that last very long because they have underlying psychological complaints about which they cannot talk because of cultural… also because of cultural differences, but also because no space is given to discuss those things, partly also because of language problems.” (general practitioner, FGD1)
As regards disorder characteristics, participants mentioned UMHNs are high in psychiatric patients with complex care needs. Patients with co-occurring mental or substance use disorders, or in whom a severe mental disorder is accompanied by problems in multiple domains are found difficult to get into treatment. They do often not fit the right criteria and some tend to be excluded due to their externalizing behavior. There is also a subgroup with complex needs which is pejoratively called the ‘revolving door patients’ or ‘frequent flyers’ because they’re continuously re-admitted to psychiatric wards or crisis units and seem resistant to treatment.
“We are often stuck with, uhm, revolving door patients as they say. Been admitted to all psychiatric institutions, not welcome anywhere anymore, drug problems on top. That is a particularly large group we can’t get away with.” (center for general wellbeing, FGD1)
Also long-term care needs increase the risk of UMHNs. Some patients suffering from severe chronic mental disorders require long-term or even lifelong care. Such care needs are currently often unmet due to a capacity problem. Patient flow ceases due to limited outflow, causing saturated long-term care services. It was mentioned that long-term care can be low-intensive in stabilized conditions, as long as there is at least some follow-up of how a patient is living one’s life.
“Trajectories that we start up today are not finished within two or three years, which also creates a waiting list. Because there are a lot of people with a request for long-term care, sometimes it’s just expressing one’s feelings like ‘today didn’t went well’.” (long-term care team, FGD3)
Finally, participants mentioned UMHNs are high in both young and old age. Waiting times in mental health care are a major problem in children and youth care. Generational problems are common, such that troublesome parenting situations lead to behavioral and emotional disorders in children. As regards youth, there is a gap in transition age. Protection of minors abruptly stops at the age of 18 and many vulnerable young people struggle with finding their place in society. Participants in both PCZs mention the phenomenon of young ‘couch surfers’ living in hidden homelessness by continuously sleeping at other people’s houses.
“In particular those young people, those 18 to 25 year old’s who are left out everywhere and who actually need more care. They are excluded everywhere, they remain in special youth care or in foster care or disabled care, then they turn 18 and everything stops and there they are.” (children and youth services, FGD2)
UMHNs are also high among the elderly. Participants argued that it’s mainly a demand-side problem, as the oldest generation isn’t used yet to the idea of mental health care. Moreover, vulnerable elderly in nursing homes often lack appropriate mental health care. For example, one participant works in a nursing home as a moral counsellor but actually has to deal with complex psychiatric needs requiring specialized staff.
“I can’t refer my people, to no one. My whole day is filled with conversations with people who are almost all tired of life. I’ve got people with Korsakov, with dementia, with delusions, with psychoses, with everything you can imagine. And I am actually the help, and that’s where it stops. […] So the philosopher is the one who has to have a little chat with them to fix it.” (moral counsellor, FGD2)
Theme 2: Attitudinal barriers associated with UMHNs
Receiving mental health care is often a matter of initiative, but many people fail to actively seek help or simply do not want to be helped. First, insight into one’s needs is often a prerequisite for mental health care, especially for psychotherapy. Insight is in particular lacking in vulnerable groups with low mental health literacy. People often feel something is wrong but experience difficulties to put their concerns into words, or to formulate an explicit request for help.
“And problem is also for those socially vulnerable: a screening is done or an intake, but those people should have a request for help, they have to be able to formulate it, where they are willing to work on, and that is so difficult for them.” (psychotherapist, FGD4)
Some people with a mental disorder explicitly and repeatedly avoid or refuse any kind of professional help and are non-compliant to offered therapies. For these care avoiders, the situation may be worrisome and urgent enough for ‘interfering care’ to take place, i.e., outpatient care aimed at protecting them.
“There is a long waiting list for the people who want to [be helped], and there’s an even longer waiting list for people who do not want to [be helped]. And the people who don’t want it, that’s often the people where it’s more urgent, where the problems are a lot more complex, where the most interfering care is needed because regular care won’t work.” (subsidized housing assistance, FGD2)
Finally, taboo and stigma hinder people from disclosing mental health problems and seeking help. Although a slight positive evolution took place in recent years, taboo and stigma remain major barriers in some groups, such as people from non-western cultures and the elderly.
“For us Belgians it’s still taboo, but in other countries it’s often even a much bigger taboo. You’re crazy, some people don’t want to talk with you anymore when you’re crazy, so then you actually can’t share it.” (family center, FGD2)
Theme 3: Structural barriers associated with UMHNs
Another theme emphasizes structural barriers in the mental health care system that hinder access to adequate mental healthcare. First, underfinancing of mental health care resulting in the lack of structural resources was regularly mentioned as an important underlying factor for UMHNs. Yet, due to the creativity of healthcare providers, interesting local initiatives are installed, financed by local organizations and authorities. This was particularly the case in the rural PCZ.
“The offer of TEJO [free therapy for youngsters, provided by volunteers], that’s fantastic. It works well and it reaches an enormous amount of young people, but at the same time it’s something to be bloody ashamed of as a society that it has to run on volunteers.” (children and youth services, FGD4)
In addition to a lack of resources, participants repeatedly mentioned a lack of time, partly due to staff shortage and bureaucratic overload (administrative burden, sharp targets, the overload of rules and complex procedures). The situation results in high work pressure, overtime, and reduced quality of care.
“ So we have to count like that: they have 36 hours of help on a yearly basis but making a report also counts, so that means about 3 hours per month. And this is how we, unfortunately, have to deal with it. And then I think, tailored care? There’s just no way to do it.” (children and youth services, FGD4)
Moreover, participants argued that a fragmentated and suboptimally distributed mental health sector contributes to the level of UMHNs in society. There are a variety of support initiatives, both in the public and private sector, but a comprehensive overview and coherence between the services are lacking. Ambiguity about the organizations’ responsibilities and offer adds to discontinuity of care, inappropriate referrals and false expectations. Moreover, concentration of services strongly differs from one region to another. Only few facilities are available in the rural PCZ, and thus mobility impedes access to mental health care which is mainly concentrated in the inner cities. Some organizations limit their services to inhabitants of a certain region.
“You get the runaround, in this region there are none, there are no specialized centers except for some ambulatory care […] You have to go outside the region, and what do those regions tell us, and that makes some sense as well: ‘we first look within our own region to be able to follow up the aftercare better afterwards.’” (center for general wellbeing, FGD3)
Also the cost and limited reimbursement of primary mental health care contribute to UMHNs. In Belgium, primary mental health care is reimbursed for a maximum of eight sessions for light to mild psychological complaints. Many people, and in particular those in the highest need, are excluded in the system. On the other hand, cost is less of a barrier for psychiatric medication or for hospitalizations, because these services are reimbursed.
“The first thing that perishes [when in debt] is actually the paid-for psychological care and so on, and then you notice very strongly in our trajectories that the fact that you can’t apply third party payment, that that’s simply the first criterium to cut something out.” (community work, FGD1)
Subsidized services provide affordable mental health care but waiting times are long, ranging from months to even several years. Not providing care at the right time is thought to be an important factor adding to UMHNs. Waiting lists are caused by insufficient capacity, but also result from suboptimal patient flows, including outflow problems.
“Then they’re on the waiting list of the center of mental health care, which is currently two years around here, so that’s actually not a solution. Those people, when they are called, they can’t even remember why. […] The problem has further developed itself in the meantime, or has landed somewhere else.” (regional coordination, FGD4)
Another barrier is the use of strict inclusion and exclusion criteria in mental health care services. Facilities often have programs or wards focusing solely on delineated problems. This may however hinder access for people whose label is unclear or who do not fit into the right criteria. Participants referred to a limited number of treatment places for people with dual diagnoses.
“What I often notice in our target group is that we work a lot with people who fall somewhere in between. Those are very complex problems and a little bit of this and a little bit of that, and generational and so on. In the hospital, the crisis is often too heavy or not heavy enough, sometimes it’s too chronic or not chronic enough.” (children and youth services, FGD4)
Theme 4: Consequences of UMHNs
UMHNs lead to negative emotions in both patients and care providers, what can eventually make the situation even worse. Crises are often the result of an escalation of UMHNs. Participants talked about ‘downward spirals’ caused by lack of care. Two extreme expressions of crises which were mentioned are involuntary commitments and suicides.
“When involuntary commitments are used for which they were intended, then it’s a good system. But if there’s so much need and so much care and so much crisis that an involuntary commitment has to be used, then you will always be shutting the stable door after the horse has bolted.” (center for general wellbeing, FGD3)
Participants often expressed feelings of frustration and powerlessness because of the large level of UMHN in society which they sometimes can do little about. They feel they have no impact on the length of waiting times, the access to mental health care for vulnerable groups and so on.
“It’s also the powerlessness we feel as caregivers. I think GP’s frustrations are often about this, also my frustrations or anyone working with those difficult cases who can’t get in anywhere because of waiting lists, but also because they burned many bridges and caused trouble and that care providers tell them: ‘No, he can no longer come to us’.” (psychiatrist in center for mental health care, interview)
Finally, all involved services become overburdened. Because of an excess demand of mental health care and limited access to specialized services, people with complex mental health needs often linger in primary care and social services. This is in particular a problem when the front-line is overloaded with people who fall through the cracks of the mental health care system but who actually need more than generalist care. Primary care then becomes not only the first, but also the last resort.
“There is a full waiting list, we are backed into a corner. And this way it’s indeed having the conversations yourself, keeping contact, connecting,… But you know you’re not the right man at the right place, and I also lack knowledge. But not doing anything is no option at all. […] That’s very difficult, also because your team suffers a great deal from it.” (public social welfare center, FGD3)
Theme 5: Recommendations for meeting UMHNs
Several recommendations for an optimal and more equitable mental health care were given during the discussions. Some participants argued that a redistribution of resources is needed in the Belgian mental health care sector. To begin with, a redistribution between regions should increase service provision in disadvantaged rural areas.
“I notice that there are money flows to primary and secondary care and that there are nice initiatives, but that doesn’t count for all regions, and not for all target groups.” (psychotherapist, FGD1)
Secondly, increasing resources for low-threshold and outpatient mental health services is needed to overcome the gap in accessible care. Mental health care is considered accessible when it’s affordable, when waiting time is limited and when referral is no prerequisite. As regards to affordability, extension of the reimbursement of psychotherapy is considered an important step.
“I think that there is a big problem in that group of people you have to offer an accessible place to talk, which first was the intention of the centers of mental health care, to be the house in the street in which you can walk in to talk.” (psychiatrist in center for mental health care, interview)
Professionals and patients also need a comprehensive overview of the available services, their target groups and organization type. Participants suggest that a central referring instance could help, is in contact with all regional services and has knowledge of criteria, procedures, etc.
“What I think would be helpful is that we don’t have to call around to know where a patient can go, or who has an available bed, or ‘this is a difficult case and I don’t really know to do with him’. […] Such a contact person who can guide us, because I lose a lot of time with it.” (general practitioner, FGD1)
We also need more outreaching care. Outreach in mental health care means that the care provider takes the initiative and reaches out to the vulnerable person instead of the other way around. Participants mentioned a high need for outreach in worrisome care avoiders and ethnic minorities.
“Street psychiatrists. People are registered from various organizations, public centers for social welfare or subsidized housing services report it and then psychiatry will ring those people’s doorbell without them having a care request themselves. [..] I think there can certainly still be made a movement, it’s on its way, but still.” (psychiatrist in hospital, interview)
We should invest in multidisciplinary and intersectoral collaboration and coordination. This is crucial, as people with severe mental disorders often need support in multiple life domains. It became clear that collaboration is currently not optimal. Participants mentioned a need for case management, in particular in complex cases or people with a social vulnerability.
“That’s why I think multidisciplinary teams are so important. You can make sure his psychotic complaints are under control with pills, but you have not treated someone that way, I think. You have to socially support, that he has a network, […] hopefully a job but otherwise daily activities, that his house stays in order a bit and the bills paid and…” (psychiatrist in hospital, interview)
Related to multidisciplinarity is the importance of continuity of care, which refers to how care is connected over time. Aftercare should be optimized, especially after a hospital stay. It was argued it benefits the patient if one can rely on the same services and caregivers over time.
“I think a great need is continuity of care. […] Everyone tries short-term, finish as quick as possible, mostly little continuity in care. […]. People feel safer if there’s still a door ajar somewhere.” (psychotherapist, FGD4)
A need for tailored care was mentioned as well, providing adequate care at the right time in the right context, thereby following stepped care principles. It was mentioned that currently some procedures or rules hinder quick and flexible care, such as a fixed number of sessions per client.
“Intensive when it’s not going well, and when people say they feel secure about themselves again, okay, the frequency simply goes down again and we’ll see what’s needed. And then you also empower people.” (children and youth care, FGD4)
Increased attention is needed to cultural-sensitive care, for example during professional’s education. Moreover, the use of interpreters in mental health care should be better supported.
“You have to know what a djinn is. It’s about, how can you connect with people in your neighborhood, with the audience you work with? I guarantee, when I would do quality research [about cultural sensitivity], that we would be appalled.” (center for general wellbeing, FGD1)
Participants argued that a strong focus on prevention will benefit the mental health of the population in the long run. Today, the emphasis is largely on curative care. It was argued that preventive interventions are a hard sell because its impact is less visible and measurable.
“I think a lot is still possible in terms of prevention, because often when something happens you immediately have a crisis or situations that are suddenly very urgent. And we notice that by making it possible to talk about psychological complaints in the form of recognizable symptoms, that it also lowers the barrier to seek help.” (Agency for Integration and Civic Integration, FGD4)
Finally, the importance of recovery-oriented care and informal supportive networks for people with mental health problems was stressed. Good practices such as buddy systems, support groups and investing in neighborhood cohesion were mentioned.
“I am thinking of working more with people’s network and people’s own strength. […] Because assistance is not forever, right. When people have significant others, professional or not professional, you notice they are also helped in the long term.” (subsidized housing assistance, FGD2)