(1) Professional influences
Practitioners interviewed from a wide variety of fields highlighted an unmet need for the children to have support to manage the impact of mental illness in their lives. It became apparent that participants described many challenges children might face in these circumstances, but were unsure how they could support them in their professional role.
„I already had the impression that many requests were from the parents or then separated parents who are mentally ill, who were asking to get some offers or support for the children, but we simply have no offers” (Interview 4)
„I think the situation for children with parents with psychiatric illness is not easy because there are no specific services for them. This is my general view…. I mean we see this problem but we do not know how to support the children” (Interview 7)
In adult mental health care there is a lack of routine identification of parents and their children, other than to check on the care arrangements for a child when a parent is hospitalised.
“My impression and my knowledge is that it [whether patients have children] is very rarely asked and that it depends on whether someone is interested or not. I mean, if a doctor who has children of her own, she might - so, I’m just assuming from experience now - ask, do you have children? But it is not a standard.” (Interview 14)
„It’s [asking about about children] not part of the system…. It’s not standard and maybe we could develop a standard as part of the project.” (Interview 1)
Services outside adult mental health also show relatively poor guidelines and a lack of standardisation of documentation protocols to support the children themselves. Various reasons are given as to why practitioners do not ask about children or the family circumstances of the person with a mental illness: lack of sensitization of practitioners to the topic, poorly addressed topic in medical training, uncertainty on how to ask and a lack of time in the daily routine of a psychiatry.
“I think that it [asking about children and family circumstances] remains the biggest challenge in this whole subject area. It often is simply still too little information there and great uncertainty in handling it and IF and HOW to address it, that is simply still difficult.” (Interview 8)
Importantly, while individual professionals have started to introduce a more family-focused care philosophy, supporting the parent in their parenting as a core principle of care has not been implemented as care standard—and participants believed that there is a lot of shame that can be harboured by families in this area.
“The context of taking care of the children is one thing, but what I do notice, what exists even less is a systematic support of the parents in relation to this topic, parenting and this whole topic of guilt and support possibilities of the parents.” (Interview 12)
(2) Political support
The mapping of the Tyrolean situation revealed several self-help associations and programs who have a focus on mental health. Some are nationwide with regional groups in Tyrol, while others are Tyrol-specific. [30, 31]. One directly targets relatives of people with mental illnesses. However, during the interviews, it became apparent, while they often deal with individual cases involving children who have a parent with a mental illness, the interest group has not achieved system changes that would improve the situation of dependent children who have a parent with a mental illness.
“We advised relatives what they could do with the children. But we didn’t accomplish … that we from our self-help association achieve something very concrete for the children. I’m still sorry today.” (Interview 14)
The mapping exercise also demonstrated that within public administration at the regional level a mental health coordinator function exists employed by the Tyrolean government. This may play a role in supporting workforce development on the regional governmental level. Mental healthcare coordinators develop and coordinate patient-oriented mental healthcare and provide care for people with addictive disorders. Services cover outpatient and inpatient care, rehabilitation and psycho-social services, prevention and self-help activities. Additionally, the coordinator organises a steering committee including Tyrollean psycho-social care providers and advises regional government and Tyrolean hospital fund. Yet, the topic of supporting children who have a parent with a mental disorder has not been systematically addressed at the strategic level so far.
Yes, it [the topic] comes up because it can be said that vulnerable children and young people who are in contact with the psychiatric landscape usually have social problems, anomalies, homelessness, alcoholism or violence and so on in the background. It [the topic] comes up all the time. But it’s not a priority right now.” (Interview 1)
(3) Social climate
Since one key component of our intervention is to activate informal care to support the children [16] the social capital of our pilot region may play a crucial role for implementation. Considering demographics and socio-economics within Tyrol, the region can be classified as traditional and conservative in relation to family formations and characteristics of education/employment [30]. For example, from around 140,000 dependent children between 0 and 18 years (19% of the Tyrolean population), the vast majority live in dual-parent families [32, 33]. Additionally, there was a slightly higher number of children per household than the Austrian average [32]. 30% of the employees are working part-time, the majority of them are women [34]. In 2016/2017, most children were cared for at home, with only 33% of children aged 0 to 14 years were using child care in Tyrol [35].
The traditional gender roles are also expressed in the interviews. When interviewees reflected on current needs, support needs are primarily identified for mothers (“…and especially the sick parents need support and especially the mothers”/ interview 14) while fathers are not mentioned at all (“they [outreach services] can support above all the mothers (..) in their educative ability / interview 14”).
However, a difference between rural and urban areas was described
Here it is even more archaic - archaic mechanisms are still in progress. There are also many large families here. I think that for many generations - dealing with problems, feelings, women’s dedication to the family and such things. These are still very, very much more pronounced here than, for example, in the city (interview 12).
Regarding religion, a catholic denomination plays the most important role in Tyrol (~80 % of population) [36]. The political history shows that the conservative people’s party has always had an absolute or relative majority in the regional government [37]. Eighty-five percent of Tyroleans are Austrian citizens. While there is a Turkish community and people from South-Eastern European countries living in Tyrol, the largest groups with non-Austrian nationality are Germans with similar cultural background [38].
(4) Local infrastructure
We identified a broad range of potentially relevant services for identifying and / or supporting affected children (Figure 2) [30]. The core services for identifying the children within the project scope are adult mental health services. They include a large variety of services (hospital and outpatient as well as psycho-social, employment-related and inpatient rehabilitation services) and are provided in various settings. Services beyond adult mental health care, which may also play a role for improving identification of the children in Tyrol, include the ‘Early Prevention Service’ for pregnant women and families with children up to three years (Frühe Hilfen), a screening program in pregnancy and early childhood (Mutter-Kind Pass), primary healthcare services, or services provided by specialists in schools including school psychologists, school social workers, or school physicians.
Following identification, services belonging to child and youth welfare field may all be potentially relevant in supporting the children and families in their daily life. Additionally, there are a number of social services offering support for children and/or families which could utilised by children of parents with a mental illness (e.g. adolescents/youth centres with specific meeting areas, coaching for adolescents, and specialised support for girls). In addition, a number of services have been identified that offer parenting support. These services could be used for parents with a mental illness to support them in their parenting roles. As has been mentioned earlier, there are activities within the informal sector, most significantly, self-help groups specific to mental health (e.g. self-help groups for family members of people with mental disorders), but also further initiatives in the voluntary sector such as host grandmothers. Out of all services that may be potentially relevant for supporting the children, there was only one service (‘Kinderleicht’) identified which specifically addresses children of parents with a mental illness, more specifically, children of parents with addictive disorders. However, this service is relatively small and at this stage, only available within two regions in Tyrol.
Besides in-kind services, cash benefits have been identified which could be used by families impacted by mental illnesses. Importantly, cash benefits were identified which are Tyrol-specific and accessible in an emergency situation or for low-income families (e.g. ‘Kinderbetreuungszuschuss des Landes Tirol’ providing opportnuities for child care).
While there is a broad variety of services available, some obvious gaps in the care pathway for the children have also become apparent. This is for example the case in emergency situations where individual solutions have been described to bridge the gap between time of admission and opening hours of child and youth welfare offices.
“And sometimes we had the problem, especially during the nights. We knew there was a child at home and nobody can care for this child right now. And then we have to get in contact with the Department for Paediatrics, not psychiatry unit but the normal clinic, asking “Do you have a bed only for one night? We need a place for this child. We don’t know what to do now. There is nobody else who can care for this child now. Could you please take this child for one night?” But, also this is a very bad situation. I mean the child is very embarrassed about this situation, that somebody else comes at home again, takes the child, to come to the clinic and go there knowing nobody, only have to sleep here tonight, we’ll care tomorrow, when the institution is working again and we will find a place for you.” (Interview 7)
Additionally, more types of services were available in urban than rural regions, demonstrating geographical variation.
(5) Policy and legal climate
Two policies at the national level (both launched in 2012) were identified that may be utilized for implementation of the planned practice approaches in Tyrol. Firstly, the Austrian child and adolescent health strategy includes five strategic goals, which are all addressed by the planned practice approaches: improve equal health opportunities, strengthen and maintain individual health resources, support healthy development early on, reduce health risks, raise awareness for health in all policies [39]. Secondly, several out of the ten Austrian health targets [40] are closely linked to the planned practice approaches and the envisaged impact. For example, the practice approaches in the Village project target aim number five (to strengthen social cohesion as a health enhancer), particularly outlining the importance of social relationships and social networks, which will be addressed by the project’s aim to activate the social support network around the child. Furthermore, they also target aim number six (to ensure conditions under which children and young people can grow up as healthy as possible), thus addressing our target group directly; and target aim number nine (to promote psychosocial health in all population groups). In addition to tackling stigma, it is outlined that “people suffering from mental disorders, and their relatives (especially parents and children) need comprehensive, appropriate care services, and their (re)integration into society must be assured [40, p. 15].”
(6) Relational climate
The services identified are legally assigned to different welfare state sectors. Most of identified existing services for parents with a mental illness are provided within the realm of the health care system. However, the majority of significant services for family, children, or parental support for their everyday life lie within the education or social affairs sectors. Consequently, families and service coordinators are confronted with a complex service financing system, whereby respsonsibilites can be born by governments at federal, regional, or muniscipal level, or by the health insurance company, or a combination of these (Figure 3). Regional government responsibility is central for many core services identified supporting children’s daily life. This suggests that it will be important to consider local politics in relation to implementing changes within existing practice. Furthermore, compared to health services, funding of those social services is frequently ‘project based’, therefore subject to discretionary decisions [30].
Having a broad variety of services and their complex governance and financing structures makes not only coordination challenging, but also the provision of individual and needs-based support becomes difficult.
“We have noticed that when more than two organizations work in a family, it can cause more confusion than it helps. Because families have in the organization of their everyday life, here this offer, there that offer, here this… “They say they only do this, they are only responsible for that, but when I need something, which perhaps needs a little bit of both, then I am back again. I may need a third organization.” That is the great difficulty, in our view, in supporting the families.” (Interview 2)
(7) target population
The available data do not allow identifying precise numbers of affected children or parents with a mental illness. Furthermore, robust epidemiological data on the mental illness in Tyrol are lacking. However, the administrative data analysis [41] showed that ~ 50,000 insured persons aged 19–64 years (13 % of the insured population) received some type of Tyrolean social health insurance (co)-funded mental health benefit. From those potential parents with a mental disorder, overwhelming, most were prescribed medication (82%), half of whom received exclusively medication, without accessing other types of insurance funded services (Figure 2). General practitioners prescribe more than 90% of psychotropic drugs in Tyrol [42]. People were most frequently prescribed anti-depressants (61%), followed by anti-psychotics (18%). Other types of psychotropic drugs were prescribed to less than 10% of patients. Forty percent of the 19–64 years old potential parents accessed some type of insurance-funded ‘physical’ service in 2017 for mental health (covering the hospital, outpatient services, or rehabilitation services). Services most frequently used were outpatient psychiatric services, accessed by over a quarter of this group, whereas only 7% were admitted to hospital inpatient or received day-care treatment (Figure 4).
A higher percentage of female insured persons aged 19–64 years used mental health benefits than male insured. This gender difference is particularly apparent for use of medication, outpatient psychotherapy and psychiatrist specialist services, whereas the proportion is almost equal regarding hospital (inpatient and day care) services (Figure 5).
Regarding hospitalised patients, the most frequently documented diagnoses were F1 (mental and behavioural disorders due to psychoactive substance use), F3 (mood [affective] disorders) and F4 (anxiety, dissociative, stress-related, somatoform and other non-psychotic disorders), whereby F1 was documented considerably more often in males than females, and F3 as well F4 were more frequent in female patients. Length of stay in hospital admissions varied considerably (range: 1 to > 300 days), however, 50 % were discharged after 15 days. Furthermore, 50 % of the patients were only admitted once during 2017 and a quarter of the patients were admitted in non-psychiatric wards (mostly internal medicine wards). No information is available on the frequency of use in services that are funded by other payers (e.g. psycho-social services which are funded out of regional taxes) or on the frequency of hospital outpatient service use.
Expert interviews with service providers and people with lived experience revealed a number of barriers to families seeking help. There is commonly a burden of care on these children, but also secrecy and fear are paramount within these families.
“The problem is … that the usual taboo mechanisms in families are still practiced. The problem is often in adult psychiatry the tendency is, in my experience, not to involve family members or the patient’s environment in that way. The parent, or even the children, to address this topic. Because, what I think is, that this is a taboo to talk about and promises difficulties. Yes. This is, of course, an extremely shameful story. Not to carry out the parental role, or to have harmed the children or such things…” (Interview 6)
A fear associated with child and youth welfare is a major barrier to families talking about their child in adult psychiatry. Stakeholders describe patients being reluctant to mention in the psychiatry settings that they are parents or do not speak about the impact of the illness on parenting, as they are afraid that the psychiatry department could contact the child and youth support and they could then remove the children.
“They keep saying child and youth office, although we are now called child and youth welfare, because it is the office that somehow has the bad taste that takes the children and never gives them back and so on. The barrier for mothers to go to child and youth welfare is often high.” (Interview 5)
Available services in Tyrol are characterised by a high proportion of public funding. However, access to many of these publicly funded services is constricted via gate-keeping (e.g. particularly depending on referral from child and youth service) [30] or limited capacities of services (e.g. psychotherapy, childcare) [43]. Furthermore, many services are reserved for families and children with severe problems. Yet, it was also pointed out that not all families need professional intervention to help them manage the impact of mental illness, and professional support was even considered to be potentially harmful in cases where the children are healthy.
“Certainly, a third [of children] can arise relatively quickly from one’s own resources, i.e. where one can activate something in the family, something that has not been considered so far. A third, where you simply have to act a little more intensively, so that something happens. More or perhaps less a third is where you really say, “It really needs interventions now, there really is suffering among the children”, i.e. perhaps roughly 20%, where I really say, it needs professional help. That is certainly not the case with all.” (Interview 13)
“I am very concerned that these healthy children - for me these are healthy children - are diagnosed too quickly and receive some care too quickly, which may not be necessary for many. If the children experience a lot of normality and good social relationships in addition to the stress in the family, they can develop quite well and stay healthy. If they get diagnosed too soon, it means for them you’re not okay. Something’s wrong with you, you need something.” (Interview 14)
(8) Funding and economic climate
The availability of funding for the children is strongly interwoven with the system of social security. The Tyrolean system of social security is an integral part of the overall Austrian welfare state structures, which characterized by a high degree of public intervention and social protection mechanisms [44]. However, social services are closely aligned with achievements through gainful employment. In 2014, spendings on public social welfare benefit accounted for in excess of 30% of annual economic value added. Healthcare comprised one quarter of total welfare spending, while another 9 % (€ 9.2 bn in 2014) was on families. The proportion of spendings on social exclusion and housing was, however, only 2 % [44]. The largest proportion of the family benefits was spent on cash benefits. Some identified cash benefits, such as family allowances, tax credits for childcare and childcare allowances, are universal transfer payments, meaning that they are independent of gainful activity and income. Other types are however dependent on employment and income (maternity allowances around childbirth), while a third category of cash benefits is means-tested, meaning that eligibility is linked to specific needs in the absence of own economic resources. Compared to international benchmarks, expenditure for in-kind benefits (e.g. subsidies for childcare facilities or family services) is low in Tyrol, in comparison to cash-benefits [45]. The regional and local governemts are the key providers of in-kind benefits. Their expenditure totalled €2.5 bn in 2014 [44].
In Tyrol, no data are available on overall spending on mental health care. However, findings demonstrate the capacity of publicly funded services is more likely to be restricted in the mental health area compared to physical health services. Consequently, patients with a mental illness more likely face private out-of-pocket payment. For example, there is a low number of child and adolescent psychiatrists who hold a contract with the health insurance in the outpatient sector in relation to need. Likewise, access to publicly funded psychotherapy services is restricted due to limited capacities and patients often need to contact a private therapist. Limited availability to services is particularly noted for child and adolescent mental healthcare [53–55].