Parent-perceived barriers to accessing services for their child’s mental health problems

The study was a cross-sectional study, where parents of all children aged 2–17 years referred to outpatient CAMHS were invited to participate. Information about barriers to help-seeking was collected using the Children’s services interview [20].

The study was conducted at the only specialized CAMHS center in the North Denmark Region. The catchment area of the center covers both rural and urban areas with a total population of around 600.000. The center assesses and treats all psychiatric disorders for children aged 0–18 years of age. Denmark has a tax-funded public sector meaning that all public mental health services are free of charge. Access to CAMHS requires a formal referral from either a general practitioner or another medical doctor, an educational psychologist, or a caseworker in social services.

All parents or foster parents (henceforth just referred to as parents) who had a child referred between 1st of July and 31st of December 2018 were invited to participate in the study.

Participants were excluded from the study, if the child was not a Danish resident, contact information on the parents was unknown, or the parents did not understand Danish.

When the CAMHS center received a referral letter for the child, an invitation to participate in the study was sent electronically to the parent along with a consent form.

After accepting to participate in the study, parents completed an electronic questionnaire comprising background information and the extended version of the Strength and difficulties questionnaire (SDQ) [21]. In addition, a research psychologist (CMJ) or medical doctor (ASH) conducted a telephone interview on barriers encountered in accessing services for their child’s mental health problem using the Children’s services interview [20].

Study participants were contacted up to three times to remind them to fill out the electronic questionnaire, and likewise three attempts were made to schedule the telephone interview before the data was accepted as missing. The median time from referral to the telephone interview was 27 days.

The Children’s service interview is a service use measure, developed to be administered by telephone [20]. It has been shown to be at least moderately valid and reliable in a clinical sample when administered by lay interviewers [20]. The first section uses a semi-structured approach to inquire about interventions received for the child’s mental health problems and the satisfaction with these within a set period. The second section examines reluctance to seek help and perceived barriers to accessing services. If a parent endorses a barrier, they are asked to specify how they experienced the specific barrier [20]. The length of the interview was between 30 and 60 min.

The extended version of the Strength and difficulties questionnaire (SDQ) [21] is a short behavioral screening questionnaire about mental health symptoms and their impact [21]. The SDQ is well validated [22], has satisfactory to strong psychometric properties [22‐24] and is useful in clinical research [25]. Danish norms for SDQ scores exist [26].

Referral source and referral diagnosis was collected from the referral letters. Previous contacts with the regional CAMHS center and current referral decision were documented from the medical records.

Continuous variables are presented with medians and interquartile ranges (IQR), and categorical variables with frequencies and percentages. T-test were conducted for continuous variables and Fischer’s exact test for categorical variables. All statistical tests were two-tailed.

To examine for representativeness, we compared the study sample to all eligible referrals in the inclusion period. For continuous variables, we could not separate the study sample from all eligible referrals, and the values given, therefore also include the study sample.

Logistic regression was used to test for specific barriers’ association with age, referral diagnosis, symptom duration prior to referral, and impairment score above the norm on the SDQ. All logistic regression analyses were tested with bootstrap using 200 repetitions. Adjusted logistic regression analyses were controlled for sex, placement outside the home, previous psychiatric assessment, age, referral diagnosis, symptom duration, and impairment above the norm on SDQ.

The level of statistical significance was set at 5% for all analyses. All statistical analyses were executed using Stata Statistical Software: Release 15. College Station, TX: StataCorp LLC.

To examine reasons for perceived barriers, the specification of why a barrier was endorsed was systematically examined by independent coders (ASH and a graduate level research assistant) using semantic thematic analysis [27]. This qualitative method for analyzing the responses was selected, despite the data not fulfilling the criteria for qualitative data, as it is not verbatim transcriptions, to better understand the different reasons as to why parents perceived different barriers to exist. Any differences in identified themes between the two coders were discussed and a consensus agreement was reach on prominent themes.

Recruitment for the study is illustrated in the flowchart in Fig. 1. 985 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 children referred within the study period, but not included in the study there were no statistically significant differences in age, sex distribution, placement outside the home or referral reason between the two groups (Table 1). However statistically significantly fewer were referred by educational psychologist (28.2 vs. 33.6%, p = 0.04).

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.

“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.

Figure 2 shows the percentage of parents who reported encountering different barriers throughout their help-seeking pathway.

Lack of information about where to seek help was reported by the majority of parents. In a systematic review from 2017 Reardon et al. found this barrier to be reported by 14–75% of parents in quantitative studies which was corroborated by a number of qualitative studies [15]. We found an association between parents reporting lack of information on where to seek help as a barrier and symptom duration prior to referral. It might be that children who have long delays in time-to-referral to CAMHS have displayed more mixed symptomology, making it harder to recognize their symptoms as a mental health problem and thus making it difficult to direct the parents to the correct services. This might also explain the higher risk for reporting this barrier for parents of children aged 10–14 compared to parents of children referred before the age of 10. Mental health problems of children referred between the ages of 10–14 might have been less clear in early childhood, making it harder for both the parents and professionals to find relevant services. Another explanation could be a lack of knowledge about child mental problems and child mental health services among professionals in primary settings. The parent’s first help-seeking contact, when a child displays mental health problems is most often general practitioners or teachers [17, 30‐32], but they often lack training in child mental health [33, 34] and might not have sufficient knowledge of which services are available or when it would be appropriate to refer to specialized CAMHS [33]. It is worrisome that even among parents, who obtain a referral to CAMHS, so many found lack of information about where to seek help a barrier. Difficulties in obtaining information about where to seek help might deter less resourceful parents from seeking out timely and relevant help for their child’s mental health problems.

Mental health disorders are still stigmatized [35] and this also applies to child mental health disorders [36], where parents of the afflicted child also experience stigmatization by association [37, 38].

In previous studies on parent perceived barriers, the most commonly reported barrier related to concerns about consequences of help seeking has been the perceived negative attitudes among other people [15].

Worrying about the child having a record and worrying about what other people would say if they sought help was reported as a barrier to help-seeking by a fifth of the participating parents in this study. This was due to concerns about both stigmatization of the child and judgement of parenting skills. Studies have shown a higher level of parental associated stigma for child mental health disorders [39] and a higher attribution of parental blame by the public for child mental health disorders [40] compared to physical disorders. This is true for both emotional and neurodevelopmental disorders, but most pronounced for neurodevelopmental disorders [40]. These findings are in line with this study, were parents of children referred for emotional disorders were less likely to endorse the barrier “Worry about what others think if they seek help” compared to parents of children referred for neurodevelopmental disorders. This might be due to children referred for neurodevelopmental disorders displaying more externalizing symptoms, which are more likely attributed to parental failure [40]. Also there is a general public opinion that neurodevelopmental disorders are being overdiagnosed more so than emotional disorders [41]. Perceived attribution of parental blame was not only reported from the public but also as an issue in the cooperation with professionals. This has previously been reported by Johnson and colleagues [42]. In their study among social workers, psychologists, and child psychiatrists one in five agreed that a child’s mental health problems could be attributed to deficient parenting and half showed some agreement with attribution of parental responsibility [42]. Professionals who were trained in child psychiatry and neuropsychology were less likely to agree with parental attribution of responsibility [42]. Also, professionals who assigned responsibility for child mental health problems to deficient parenting were less likely to refer the child to services [42], which was a barrier reported by more than half the parents in our study. It is therefore possible that professionals’ reluctance to initiate interventions or refer the child to other services could in part be due to the attribution of the child’s mental health problems to parenting problems. This could result in too large a focus on interventions aimed at parenting skills as supposed to targeting the child’s mental health problem.

There has been increasing focus in child mental health policy on multi-agency collaboration across healthcare, educational, and social service sectors, with the aim of providing early interventions for children with mental health problems [17, 43, 44]. However, several barriers to multi-agency collaboration have been identified [45] and this study supports that the multi-agency nature of child mental health services creates barriers for parents in their help-seeking. Lack of information about where to seek help might in part be due to difficulties navigating between services spread across different sectors for both parents and the professionals. In addition, legislation within educational services, healthcare services and social services are not always aligned making coordination and collaboration within child mental health care more challenging. For a multi-agency collaboration to function well, it is important that the involved services possess enough resources and competencies to provide relevant interventions within their field. Unavailability of services is a frequently reported structural barrier in studies on parent perceived barriers [15] and inadequate resourcing is the most commonly cited barrier to multi-agency collaboration [45]. In this study almost half of the participants reported unavailability of services as a barrier. In addition, more than half reported professionals refusing to initiate interventions or provide a referral. This could be a result of both lack of knowledge and lack of resources. Lack of communication between services was another frequently reported barrier in this study. This is another potential barrier to successful multi-agency collaboration [45‐47]. Cooper et al. advocate for the need for adequate channels of communication between different services and a named link person to improve the collaboration and communication between services [45]. This could tackle some of the challenges raised in our study of the parent becoming the carrier of information between different professionals, which is an additional demand on parents already strained by their child’s mental health problems.