Introduction

Prompt access to assessment and suitable treatment for children and young people with mental health concerns are fundamental to improving outcomes [1, 2]. Prior to the Covid-19 pandemic, population surveys across high income countries reported that less than half of those meeting criteria for a psychiatric diagnosis were in contact with specialist mental health services [3, 4]. Commonly reported barriers to seeking professional help for mental health concerns [5] include a lack of information, embarrassment, and concerns around patient-therapist confidentiality. One Australian study found that a fifth of young people professionally assessed as having a disorder did not perceive a need for care, and that only half of those who did recognise a need reported mental health service use [6]. Once help is sought, other frequently cited factors likely to limit access to treatment include unclear referral criteria and high thresholds [7]. Research in the UK found that on average a quarter of children and young people referred into Child and Adolescent Mental Health Services (CAMHS) were assessed as not meeting the threshold for access, and those who did may be met with long waiting times for assessment and treatment [8–10].

Restrictions imposed during the Covid-19 pandemic, with school closures and limits to face-to-face contact outside the household, heightened concerns regarding help-seeking and access to treatment for mental health [11, 12]. In many countries, the focus on services switched to treat those affected by Covid-19. As a result, the availability and delivery of usual health care including mental health was severely disrupted [8, 13]. In England, following the initial lockdown in March 2020, child and adolescent mental health (CAMH) hospital admissions and referrals to specialist services via education and primary care fell by over 8% [8]. There was also a drop in primary care prescriptions of antidepressants and primary care presentations of self-harm, depression and anxiety among young people over a similar time period [14]. The impact of the pandemic on help-seeking behaviour was also evident in England’s Mental Health of Children and Young People (MHCYP) survey in 2021, where 26% of parents reported not seeking help for a child with a probable mental disorder between Summer 2020 and Spring 2021 due to the pandemic [15]. The impact on young people’s help-seeking behaviours appeared most marked, with more than half of those with a probable mental health disorder reporting they had not sought help. Changes in help-seeking behaviour were not limited to mental health. In one study of people with serious non-Covid-19 conditions, restrictions were perceived as limiting opportunities for symptom recognition, as well as leading to feelings of concern or fear about seeking help [16].

Despite this initial fall in help-seeking behaviour and mental health service contact, studies of population prevalence in England suggest an overall increase in probable mental health disorders among children and young people, with a rise in 5 to 16 year olds from one in nine in 2017 to one in six in 2020, which was sustained in 2021 and 2022 [3, 15, 17, 18]. An systematic review of the international impact of Covid-19 on children and young people’s mental health suggested an overall slight deterioration in broader measures of mental health, although findings were mixed [19].

This qualitative study aimed to complement existing routine and survey data by providing insight into why parent and young people chose to seek help from professional services during the pandemic for mental health concerns. To our knowledge, this is the first study to specifically explore experiences of mental health-related help seeking in this group during Covid-19. Understanding these experiences will paint a clearer picture for professionals and policy makers. We hope to inform service design and optimise outreach and targeted support. This is particularly important as current research indicates the most disadvantaged continue to be those least likely to seek support for their mental health needs [2, 3, 9, 20, 21].

Methods

Ethical approval for this study was obtained for this study from University of Exeter College of Medicine and Health Research Ethics Committee and Cambridge Psychology Research Ethics Committee (PRE.2021.047). Written informed consent was obtained from all participants prior to participation as approved in ethics.

The original survey obtained ethical approval from West London and GTAC Research Ethics Committee. Data sharing was approved by National Health Services (NHS) Data Access Request Service (DARS) (DARS-NIC-331532-B5T0C). All methods were carried out in accordance with relevant guidelines and regulations.

Analysis

We selected reflexive thematic analysis approach to explore these data as the six phase process reflected the overall research question of understanding experiences of help-seeking during the pandemic [25, 26].

Interviews were recorded and transcribed using an approved transcription service. Data were managed using NVIVO 1.6.1 [27]. All researchers recognised that their role as researchers and their experiences of healthcare services may influence their expectations and interpretations of the data, and this was explicitly discussed as part of the analysis process.

To explore the range of meanings within the data, an inductive method towards the data analysis was taken. The research team (FM, TND and SBC) each read 2 of the transcripts as part of initial familiarisation with the data. These data were approached flexibly and openly to generate initial concepts. These 6 transcripts were then double coded by one other member of the team (FM, TND and SBC). Initial codes were discussed at length, with all codes noted. The remaining transcripts were coded by a single researcher (FM) who generated additional codes where identified. Additional codes were then discussed and further refined with the research team, to develop a final coding structure (FM, TND & SBC). Candidate themes were then developed and defined by the research team (FM & TND). Each theme was reviewed to consider a) how well the theme was supported by the underlying data, b) how distinct the themes were from another, and c) how they related to one another (see Fig 1). The decision was made to retain sub-themes which describe key and distinct aspects within the overarching theme. A more deductive approach was used to code responses to questions about to parents and young people’s recommendations to improve experiences of professional service access given their opinions were specifically solicited (see S1 Appendix Topic guide). This was an isolated direct question fell outside the remit of the other open questions and the researchers (FM & TND) took the decision to analyse and present the data in a separate section. We used a simple analysis of grouping responses into categories which lay under the then pre-defined theme, Recommendations.

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Fig 1. Mind map showing themes, sub-themes and concepts derived from participant interviews.

https://doi.org/10.1371/journal.pone.0297417.g001

Following agreement of the generated themes, anonymous quotes of the transcripts were selected to support the concepts. The final themes were then reviewed and agreed by the full research team, again considering internal homogeneity and external heterogeneity (FM, TND and SBC). The research team (FM and TND) approached the full research team (KS, SBC, SH & TF) to review, refine and agree the final themes, being receptive to and incorporating feedback on the structure and linkage of the themes, sub-themes and codes.

Results

Four themes were generated (see Fig 1) relating to the experiences of help-seeking for mental health concerns during the pandemic which included: Process; Priorities and pressures; Expectations and Experiences; and Relationship with Professional.

Recommendations

Parents and young people were asked for any suggestions they had to improve the help-seeking process given their own experiences. These recommendations are tabulated (see Table 1) to make them accessible, and to reflect focussed responses to a specific question in the topic guide (see Methods & S1 Appendix).

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Table 1. Recommendations from parents and young people on improving access to help for mental health.

https://doi.org/10.1371/journal.pone.0297417.t001

Discussion

This study is to our knowledge the first to examine parents’ and young peoples’ experiences of help-seeking from services in England for mental health concerns during Covid-19. Our findings reflect a variety of experiences of the process of seeking and receiving help during a period of unusual and restrictive practices, rapid change and uncertainty. We identified four themes: Process; Priorities and Pressures; Expectations and Experiences; and Relationship with Professional. This study also highlights Recommendations from parents and young people and wider implications for policymakers and professionals.

Our results show the process of help-seeking experienced by parents and young people was varied, and common challenges emerged. Many reported feelings of frustration and distress owing to long waiting lists, which continue to affect child mental health services [8]. Long waits for treatment are found to exacerbate symptoms and impact development [2, 9, 10]. For others, the referral process was unclear and left them feeling uncertain whether they met the threshold for service access. Thresholds and access criteria have been widely cited as a significant barrier to service access, with a recent report finding that a third of children and young people who are referred into services did not meet the threshold [9]. Unclear processes around referral combined with a high threshold for service access are likely to increase distress, especially when a long wait for services is unsuccessful [7]. Clarity around the process of help-seeking is particularly important for young people who are much less likely to seek professional help for mental health concerns, and who may also be transitioning from child to adult services [3, 6]. Our study also highlights the potential mismatches between messaging and advertising which encourage young people to reach out for support, and what is available in practice, which risks further discouraging help-seeking [8, 9]. Accounts of help-seeking via education settings were reported less than expected, given that education professionals have previously been shown to be a main point of contact and referral for children needing support [3, 28]. One explanation for this may be changes in education provision during the pandemic, as much contact both for parents and children with schools and early-years settings shifted online, reducing opportunities to identify or discuss concerns [29].

Our findings suggest that perceptions of the prioritisation and pressures of Covid-19 directly influenced decisions made by some young people and parents not to seek professional help, which echoes a Canadian study by Markoulakis et al. [10]. They reported that young people and caregivers had ‘negative perceptions’ of service availability during Covid, and uncertainties over what was on offer. This is in addition to the usual barriers perceived and experienced by young people in accessing professional based mental health support [30, 31]. While those experiencing other socio-economic challenges experienced more marked barriers to service access others have raised concerns about differential impacts of the pandemic on the most vulnerable population groups [2, 3, 9, 21]. In our study, some participants also appeared acutely aware of the pressures being felt by health professionals, and seemed to wish to avoid adding to these. Several commented on changes in the professionals supporting them due to staff sickness, which contributed to their perceptions of a system under strain. The challenges faced by health care services during this period were openly disclosed by professionals who reported struggling to provide the quality of care they felt patients should receive [32, 33]. Expectations of services seemed to be directly influenced by these perceptions. In our interviews, a number of participants were keen to express gratitude for any help that was received, or acknowledged when telling their own story that others were worse off. Some also attributed problems or shortcomings in their care to the pressures of Covid. A ‘sense of duty’, and concerns over burdening healthcare were also reported by Parretti et al. [16] in their study of help-seeking for serious non-Covid health concerns in the UK. In Parretti’s study, some participants explicitly connected such feelings to public messaging and media reporting during the pandemic, but this was less obviously evident in the accounts of our participants. The experiences we report may contribute to the initial drop in referrals reported by many studies using routine data [33, 34]. The combination of decisions made not to access help and the fluctuation in levels of help available are of particular concern alongside reports of sustained increase in probable mental health disorders in England’s national child mental health follow-up surveys [15, 17, 18]. Not only that, the recent spike in referrals by 81% compared to the same period in 2019 suggests a backlog of suppressed demand [34]. England is not alone in this pattern of service drop and demand, as mental health care professionals in other countries report referrals exceeding pre-pandemic rates [33].

Parent and young people’s experiences and expectations of mental health services during Covid-19 were also affected by the rapid move to online-based support revealing both positive and negative aspects. Some parents raised concerns about the accuracy and depth of on-line assessments. In one case, the experience of being on camera was acutely distressing to the child. This is also discussed in Markoulakis et al’s [10] study of caregiver’s experiences of youth mental health during the pandemic where caregivers reported difficulties in engagement and rapport online, voicing a preference for in-person care. Research with professionals echoes some of these concerns, with mental health staff finding that whilst online consultations had many advantages, it was often not accessible or suitable for those considered most vulnerable including those experiencing domestic abuse, family conflict, or those where the therapeutic relationship was more difficult to establish [20]. Unsuitability of on-line support for children was also a concern raised in Werling et al. [33] who highlighted the need for play and interaction in the provision of effective mental health care for children which was difficult to achieve online. For some participants in our study, the continuation of access to support was of greater importance and seemed to outweigh the delivery of online therapy.

These experiences linked to the role of relationship with professionals, another of our themes which is well established as important to healthcare [5, 32, 35]. Those who had a positive relationship with the mental health professional typically described hallmark traits experienced in any good relationship including trust, flexibility and respect [5]. Conversely, some participants described experiencing the behaviour of professionals as undermining or unacceptable, which added to the stress of the situation and resulted in delays in access to care or disengagement with treatment. Improving access to mental health care for children and young people must be a priority for pandemic recovery. Services were already under pressure prior to Covid, but even a slight deterioration in mental health on a population level can have a much greater impact on population level service provision [17, 19]. Importantly, our participants’ recommendations of how to improve their experience centred around early access, availability, communication and clearer information (see Table 1). These recommendations can be used alongside existing research outlined in this study to inform the mental health and wellbeing plan, now to be incorporated within the NHS Long term plan [36]. Recent reports show just over half of all clinical commissioning groups (CCGs) in England spend the targeted 1% of their budget on child and young people’s mental health services. The recent spike in demand for treatment and already long waiting lists means an increase in service provision is desperately needed as the current backlog of need is being faced by an already stretched service [8, 9, 17, 19, 33]. In addition, prevention and targeted intervention for those at greater risk and less likely to access support are also needed to stem the flow.

The delivery of access and availability of support presents a significant challenge and perhaps one of the most alarming realisations from Covid-19 restrictions was the inability for children and young people to access mental health school-based hubs. In March 2021, in response to ‘levelling-up’, the Department of Health and Social Care (DoHSC) pledged some of the £79 billion for children and young people’s mental health to be used to improve school based mental health support [37]. The continuous delivery of these hubs needs serious consideration in the event of future school closure ensuring the most vulnerable receive the support they need. It is also fundamental to understand the limitations of virtual service provision. Both parents and young people recommended increased accessible mental health information, appropriate/tailored sign posting and available service support. Where a child or young person is waiting for support or a service reject a referral, clear signposting to other services which have not already been exhausted by families is required [38].

Conclusion

Our research suggests that restrictions arising from the Covid-19 pandemic made the process of help-seeking more complex, and perception of pressure on services may have affected decisions to seek help. The quality of the relationship with the mental health professional shaped the experience and expectations of those getting help. Accurate planning and implementation of accessible support for those waiting for assessment or treatment seems essential in light of the current demand.

Supporting information

Acknowledgments

Lauren Cross contributed to the patient and public involvement which informed participant information.