We constructed six themes on care-experienced young people’s views and experiences of primary care. The first four themes explained participants’ reticence to seek healthcare support for mental health or relationship concerns and were connected in a feedback loop (see figure 2). Figure 3 summarises how the themes relate to features of candidacy theory.
Figure 2: Participants’ reticence to seek healthcare support for mental health or relationship concerns
Figure 3: A summary of each theme’s connection to candidacy theory
3.1 “You wouldn’t tell your business to a stranger, why would you tell your business to a doctor?”: mental health was a prevailing concern, but primary care was not considered a place to discuss it
Although mental health was highlighted by all participants as a salient health concern for them, and they spoke cogently about the impacts of poor mental health, most participants thought that a GP was not a suitable person to speak to about mental health or relationship concerns. This theme aligned with the candidacy feature of ‘offers of, resistance to, services,’ describing participants’ reticence to receive emotional support from primary healthcare professionals.
Some participants thought that talking to young people about mental health or relationships was not part of a GP’s role or that they would be disinterested; some participants explained that a GP’s role was to diagnose and treat problems rather than to listen and understand their struggles. Several participants thought GPs lacked knowledge of how to support young people that had experienced trauma. One participant, who was an unaccompanied minor, said she thought a GP would have nothing to offer that could help her with the sadness she felt from being separated from her mother:
“I’m living without my family, my parents and then I don’t think sometimes I can live even without my mum, if I go to my doctor, if I told him that I have a problem in my knee… I believe that they can treat it but… they cannot make my mum to come here and then meet her” Participant_6
When participants discussed who they would prefer to speak to about their mental health, many commented that they would rather see a specialist/therapist who had expertise in mental health and with whom they could form a relationship through regular contact. Many young people also reported that they would prefer to talk to family and close friends about their worries because they trusted them and knew them well, and a couple of participants said they would open-up to another trusted adult (e.g., their carer or a social worker).
3.2 “It’s slightly nerve-wracking every time”: opening-up to a healthcare professional was considered difficult and risky
Many participants described the difficulty and potential risks of opening-up to a healthcare professional. We constructed two sub-themes: 1) difficulty in disclosing health, emotional and social concerns, aligning with the candidacy feature of ‘appearing at services,’ young people’s ability to explain their needs in a way that enabled them to access the right care; and 2) the perceived risks in opening-up, supporting the candidacy feature of ‘offers of, resistance to, services’.
Difficulty in disclosing health, emotional and social concerns
Many participants described the ‘struggle’ they had in opening-up to other people about their health, emotional and social concerns, matters that they considered to be very private or personal, and several young people said poor mental health could leave you feeling ‘trapped’ inside yourself. Figure 4 contains a short monologue created by two participants describing these feelings.
Figure 4: YP-created monologue presenting a young male’s difficulty in opening-up
Several young people said that it was difficult to talk about their emotional or social needs with GPs, for example, the emotional strain of wanting to have more contact with a birth parent. One participant explained the feeling of having to look after themselves after being separated from their birth parents, making it difficult to know who to confide in:
“It’s like you have to take responsibilities for yourself now because you’re not living with your parents, it’s like you can’t say anything you would tell [to] your parents,” Participant_8
Two participants described how they were unable to express their fear of pain and the uncertainty of dental procedures when they were at the dentist.
Participants had different views on whether being accompanied by their carer in an appointment was a help or hindrance to disclosure, which may be age-related. Two participants (aged under 16) reported that they would feel safer in GP appointments with their carer, one of whom also thought that a GP’s enquiries would be more thorough if their carer was present. Two participants (aged over 16) preferred to see a healthcare professional alone because they felt uncomfortable to speak openly in front of their carer. One participant (aged over 16) reported that they would prefer to attend their health review unaccompanied but were not aware if they could request this.
Perceived risks in opening-up
Participants reported that disclosing concerns could make them appear vulnerable or expose them to judgement or criticism, for example, raising a trivial issue when other patients had genuinely serious problems. It could result in an unwanted/unknown outcome, such as the doctor speaking to their carer or another professional without informing them. Participants noted it could potentially make the problem worse, for example, by increasing stress for others, or lead to embarrassment. Two participants highlighted the counter argument that there was a risk in a problem worsening if nothing was done.
Most participants recognised that healthcare professionals would need to report safeguarding issues to children’s social care. When asked what would be considered a safeguarding concern there were varied responses: issues with family members, if a young person were in danger or were self-harming. Several participants commented that they were unclear on what constituted a safeguarding concern and so it was a risk to disclose concerns without being sure of the outcome:
“They say it’s confidential until like it gets really bad, like sometimes you don’t know what counts as really bad… sometimes you could say something and they might tell your carer, even though you don’t think it’s that bad. So… I don’t know what I can and can’t tell them, like what the limits are.” Participant_5
3.3 “It's not like easy to just open-up to someone that you just met”: a lack of time and personal connection made it difficult to explain needs and concerns
The nature of consultations at general practice and dental services constrained young people’s ability to explain their needs, supporting the candidacy feature of ‘operating conditions and local production of candidacy.’ Participants’ willingness to disclose concerns was affected by a lack of personal connection with a healthcare professional. Regularly seeing the same professional was a preference for most participants so that they could get to know one another and develop ‘a mutual respectful relationship,’ but it was not the reality; however, two participants described how they had known their GP for several years and felt able to have difficult conversations. Most participants described how it took time to build rapport with healthcare professionals and the prospect of opening-up to a new person could be daunting.
“Say if it’s the first session and they’re saying, ‘Oh this child’s not opening [up] already, I want her to open up,’ it’s just like you’re kind of pressuring a child to open up, they might not say it to the child’s face, they might just say it to the child’s parents, it might be like 4 or 5 sessions or 10 sessions for the child to open up because maybe that child has trauma of trusting people.” Participant_11
Some young people reported feeling frustrated at having to repeat their concerns multiple times to different professionals. Two participants reported that a change in foster placements meant that they had to attend different GP and dental practices which resulted in losing the existing connections that they had made.
Some participants also highlighted the importance of the gender and ethnicity of the healthcare professional in creating a connection. A few reported that they would prefer to see a professional of the same gender because it made them feel physically safer (i.e., a young woman preferring a female doctor) or emotionally safer to disclose their concerns. One participant highlighted that they would prefer a therapist of the same ethnicity because they thought the professional would better understand their experience of being marginalised:
“It’s like talking to people about what it is to be black is kind of hard. When I think about it really, if I had a therapist who is black as well or kind of understands what racism feels like, it’s going to be more easy for them to sympathise with me than it is for a white therapist because they have privilege.” Participant_11
Most participants recounted experiences of feeling rushed in their appointments with their GP, “it’s like rush hour for them” (Participant_9), and reported that care-experienced young people may need and benefit from being given extra time to disclose concerns. Some participants felt that they had not had a chance to explain their worries properly or that the GP was not fully engaged in their consultation and perhaps their mind was elsewhere:
“Participant_13: It’s just a quick in and out thing. Like they just see you for your issue, they're just prescribing medication and then they just send you out. There's not enough time to like actually have a proper convo with them…”
Several young people recounted experiences of being hurried through their dental care, leaving one participant in pain and needing further treatment, one in pain during lengthy surgery and feeling unable to ask for a break, and another switching orthodontists because the procedure had not been properly explained to them and they were too anxious to complete the treatment.
Two participants described how care leavers might need extra support, warmth and time from reception staff and healthcare professionals when they started to attend healthcare settings independently, as they had to learn to navigate many new experiences at once.
3.4 “When I tell you something, you’re not listening to me”: experiences of feeling judged, dismissed, or misunderstood by healthcare professionals increased perceptions that primary care was ill-suited for sharing mental health or relationship concerns
To enable young people to disclose their health concerns, participants reported that they needed to feel ‘safe’ or ‘comfortable’ and know that a professional would listen to them with interest and care and would not judge them. Several participants expressed firm normative beliefs about the behaviour of healthcare professionals, including that they must: help with both physical and mental illness; ensure your safety; refrain from passing judgement; listen to their patients:
“About certain things doctors and nurses aren’t allowed to question or query or judge you for something because actually at the end of the day it’s a profession. Their job is to help you and support you through it in the best way they can.” Participant_4
However, normative beliefs largely did not match participants’ actual experiences; many reported that professionals had not taken their views seriously or made judgements about the treatment they required without fully understanding their needs, aligning with the candidacy feature of ‘adjudications’. Some participants had felt that they had been given medication as a temporary solution rather than the GP taking the time to investigate further. While two participants described a trusting relationship with their GP, many young people reported feeling disregarded or belittled. Two participants (aged under 16) described how a GP had dismissed their difficulties as typical transient adolescent problems instead of comprehending that they were related to trauma experiences:
“They will all say like you’re going through a phase where like it’s like a normal teenage phase... but if you actually go back into the past, for example, of what I’ve been through as well as a young child, then this is not just a phase, this is just a like... It’s like a scar.” Participant_8
“…kind of hard talking to your doctor about it because they’re just going to say, ‘Oh no, you’re just going to feel like this, it’s like… just temporary,’ ‘Oh you’ll just get over it,’ and stuff and it’s like sometimes it feels like they’re not even listening to you.” Participant_11
Experiences and perspectives of judgement were discussed in each workshop. Many participants described feeling alert or vigilant to potential judgement from GPs about their behaviour or their presenting health issue, and carefully read body language and verbal cues. One participant insightfully explained that their life experiences had made them more sensitive to negative interactions:
“You do put your guard up massively and for people that are in care a lot it’s even worse if you get let down once, it’s like the whole world’s been thrown at you but really someone probably just couldn’t help you out that day” Participant_3
3.5 “I’ve been trying to get braces for so long”: variation in the timeliness and location of services
When participants had decided to seek help, they had mixed experiences relating to the timeliness and location of services, chiming with the candidacy feature of the ‘navigation of services’. Many participants described difficulty getting a GP or dental appointment or being offered appointments that were several weeks away. Several participants described the frustration they experienced after having to wait years for dental care or to have their braces put in.
“I was waiting to… get braces in like Year 7, but I didn’t get them till like Year 10…. They just kept saying that the list for people that wanted braces was… full… I wanted them because I needed them, and I used to get bullied… because of my teeth.” Participant_12
In contrast, one participant thought access to medical services had been easier for them because they were prioritised as a looked after child. One participant who was a care leaver said they had never experienced difficulties with obtaining a dental appointment, however, they had not attended the dentist in several years due to cost.
Participants had different opinions of how easy it was for them to physically access primary care services, depending on whether their carer could take them, if it was in walking distance or whether they had access to, or the money for, public transport. A few participants indicated that ease of access affected how likely they were to attend, and could be a barrier to their needs being met:
“You’ve got the worry of going to the doctors in itself and then the worry of the travel itself, so you’ve then got a lot of pressures that are then building up to then the point at which you probably just think “you know what, I’d just rather not go.” Participant_3
3.6 “It was more like, just get it done sort of thing”: difficulty making sense of the purpose and value of annual health reviews
We explored participants’ experiences of annual health reviews in the workshops. This theme aligned with the candidacy feature of ‘identification of candidacy,’ as young people were reflecting on why they might need this service. Most participants reported that their reviews were not something that they were actively involved in, rather something that was mandatory and unproblematic but rarely useful. Aside from one young person who received health reviews in school, there was little sense that participants saw the same healthcare practitioner for their reviews. There was a perception across participants that the health reviews largely focused on checks of height, weight, and heart rate, and in some cases, general questions about how things were going.
Most participants found it hard to make sense of the purpose or value of health checks; one participant thought the measures of height and weight was perhaps something a biological parent would have carried out, and two participants thought perhaps a young person would be put on a weight plan if they were overweight. A few participants appreciated the opportunity to have an annual health check “because there might be something wrong” (Participant_1) and because it was an opportunity to raise a concern. However, one participant found the checks annoying as they interrupted their free time at school and they considered themselves healthy, and another young person expressed frustration that if they raised any genuine health concerns, they were referred to their GP (perceiving the review as somewhat meaningless).