Recruitment for the study is illustrated in the flowchart in Figure 1. 986 primary caregivers were eligible to participate in the study. Of these 278 (28.2%) consented, but only 244 (87.8%) completed the telephone interview. For the 244 completed interviews, 236 also completed the electronic questionnaire.
When comparing the children of the participating parents with all children referred within the study period, there were no statistically significant differences in age, sex distribution, placement outside the home, referral source or referral reason between the two groups (Table 1). However, fewer children of the participating parents had previously been assessed for a psychiatric disorder (38.2% vs. 29.9%, p=0.02).
Characteristics of the referred children in the sample
As seen by Table 1 the median age of the referred children was 12.8 years of age (IQR 9.8-14.6) and 60.7% were boys. The majority were born in Denmark (97.0%) and 8.6% were placed outside of the home. As for schooling 17.6% were placed in special education programs.
The median duration of parent reported child mental health problems prior to referral to CAMHS was 5.6 years (IQR 3.1-9.0), and just under one third (29.9%) had previously been assessed for a mental health disorder. The majority of children were referred for neurodevelopmental disorders (59.8%), 30.3% for emotional disorders and 13.1% for other disorders. Most of the referred children had a total SDQ problem score (86.9%) and an SDQ impairment score (85.6%) above the norm.
Parents’ general attitudes towards help and services received prior to referral to CAMHS
“Hesitation to seek help from professionals” was reported by 41.0% (n=100) of the parents. Thematic analysis of the specifications for hesitation revealed difficulties in differentiating normal development from mental health problems and needing time to accept that the problem is beyond what you can handle yourself as prominent themes. Some parents also stated that needing help to handle their child’s mental health problems made them feel like they failed as a parent.
The majority (62.7%, n=153)) of parents reported that child mental health interventions before referral to CAMHS have had some impact. Being listened to and taken seriously by a professional made a difference as did speedy referral to relevant services and receiving services directed towards both the child and the family.
Parent reported barriers
Figure 2 shows the percentage of parents who reported encountering different barriers throughout their help-seeking pathway.
Barriers related to the parents
The most frequent barriers related to the parents were worries about the child having a record (n=54, 22.1%) and worries about what other people would think if they sought help (n=49, 20.2%). Concerns about what it would mean for the child to have a record were related to worries about their child being labelled and subsequent stigmatization and consequences for future employment and insurance.
Worries about what others might think if they sought help for their child were due to negative attitudes of relatives and friends towards child mental health disorders and mental health services and concerns that others would judge their parenting skills and, in some cases, also concern from the child about negative attitudes from their peers.
Worry about the child being removed from the home (n=39, 16.1%) was primarily a barrier to seeking help from social services prior to referral. Parents expressed concerns about being viewed as a bad parent and being blamed for the child’s mental health problems when seeking help.
Barriers related to services
The most frequent barrier overall was lack of information about where to seek help (n=147, 60.3%). Parents did not know what services to contact to access help, they felt that services often “passed the ball around” and they missed information about their rights regarding help and support for their child. Many parents stated that it required many resources to be proactive in help-seeking.
Just below half of the parents had experienced that relevant services were not available to them (n=116, 47.5%). This was due to long waiting times, lack of flexibility from services, rejection of referrals to CAMHS, and the experience that it was hard to access services in other sectors without an assessment from CAMHS.
About one third (n=86, 35.3%) of parents perceived it as a barrier that no one in the system could help their child. Lack of knowledge from the professionals involved and a perception of lack of resources within services was specified. Some parents also had the feeling that it was difficult to obtain the right help if their child did not display prototypical symptoms of a mental health disorder or the child’s symptoms were either too mild or too severe to access specific services.
Worries about the cost of getting help (n=44, 18.0%) and help not being available at a convenient time, was only reported by a minority of the parents and were both linked with parents having to take time off from work to attend appointments.
Barriers related to cooperation with professionals
The most frequently endorsed barrier related to cooperation with professionals was the perception that professionals did not listen (n=146, 59.8%). This was across all sectors and across different professions. Parents often felt that their observations were less valuable than observations by professionals, and many parents felt blamed by professional for the child’s difficulties.
More than half of parents (n=131, 53.7%) experienced that professionals refused to initiate an intervention or provide a referral to other services. This included teachers not wanting to refer to educational psychologists, disagreement between professionals about who should refer the child to CAMHS, professionals opposing referral to CAMHS and CAMHS rejecting referrals.
Lack of communication within or between services was also a barrier for half the parents (n=129, 49.2%). They experienced information getting lost in transition between services, and many parents experienced a large overturn of professionals involved in their child’s case with insufficient handover. GPs did not have access to information from educational and social services and parents felt they had to be the carrier of information between different services.
Bad previous experiences with a professional was reported as a barrier by 39.3% (n=96). Lack of follow through from professionals on agreed upon interventions and the perception of being blamed for their child’s mental health problems was specified for this barrier. In addition, previous experiences of professionals downplaying the child’s mental problem made parents hesitant to pursue help again.
Factors influencing parent perceived barriers
Barriers’ association with age
No barriers were associated with the age of the referred child in the adjusted regression model (Table 2).
Barriers’ association with referral diagnosis
The only barrier statistically significantly associated with referral diagnosis was “Worried about what others think if they seek help”. Parents of children referred for emotional disorders were less likely to report this barrier compared to parents of children referred for neurodevelopmental disorders (Adj. OR 0.21 (95%CI 0.05-0.88)) (Table 2).
Barriers’ association with symptom duration prior to referral
As seen in Table 3, parents of children with symptoms for >5 years endorsed the barrier “Worried about the child being removed if they seek help” more frequently compared to parents of children referred within the first year of symptoms (Adj. OR 3.32 (95%CI 1.03-10.76)).
Both parents of children with symptoms for 1-5 years (Adj. OR 3.35 (1.03-10.93)) and >5 years prior to referral (Adj. OR 4.62 (1.46-14.62)) had increased reporting of the barrier “Lack of information about where to seek help” compared to parents of children referred within the first year, and this finding was most pronounced for the parents of children with symptoms for >5 years.
The barrier “Bad previous experience with professionals” was only statistically significantly associated with symptom duration for parents of children with symptoms for >5 years (Adj. OR 4.78 (95%CI 1.17-19.45)).
Barriers association with SDQ reported impairment
Parents of children who scored above the norm for impairment on the SDQ were more than 5 times as likely to report “Worried about what others think if they seek help” as a barrier (Adj. OR 5.76 (95%CI 1.79-18.48) and were also more likely to report “Worried about confidentiality” as a barrier (Adj. OR 3.57 (95%CI 1.15-11.10) compared to parents of children who scored within the norm (Table 3). Also, they were more likely to report the perception that “No one can help” (Adj OR 2.91 (95%CI 1.00-8.42)).
For barriers related to cooperation with professionals, there was an association with impairment for “Professionals do not listen” (Adj. OR 2.56 (95%CI 1.14-5.72) and “Lack of communication between services” (Adj. OR 2.50 (95%CI 1.02-6.14) which were both more frequently endorsed by parents of children scoring above the norm score for impairment.