In total, there were 291 respondents, with no repeats when the core demographic data was combined, (such as location, age of child, structure of healthcare and disease duration), implying that there were no repeated entries from the same individuals in one household. Demographic data are shown in Table 1. Respondents were from all geographical regions across the UK, with the largest proportion living in Scotland (60, 21%) followed by the South-East of England (45, 15%). Time spent on a waiting list for the 29 (11%) who reported being on a list, ranged from 1 to 24 months, with a range of comments, with 5 reporting 12 months, some just saying “months” and some saying “unsure”. The largest majority of patients (35%) had been diagnosed for longer than 6 years.

Table 1 Demographic and clinical care details Quantitative data

Table 2 shows responses to all the closed questions. Respondents were asked to select an option regarding their child’s, or their own (if a young person), current situation regarding mental health support. Of the 283 responses, 115 (41%) stated that their child/young person have not needed mental health support. Of the remaining 168 (59%), 62 (22%) children and young people have previously had, 51 (18%) are currently having or 55 (20%) are waiting for mental health support. There were free text comments from families who shared that they need intervention, but had not yet received any and were also not on a waiting list (as evidenced by some of the comments received). There may be some in this category who have not yet asked for help, but recognise that intervention is needed. Of the 8 non-respondents, 6 were parents and 2 were a parent and child dyad completion; all of these reported that they had never been offered access to mental health support services, they were all unaware whether their hospital team had access to mental health services, and all responded that their child’s diagnosis, had impacted their own mental health.

Table 2 Responses to closed-ended questions

Overall, over half (153, 53%) of respondents reported that they were unaware whether their hospital team had access to mental health support services if needed, with 116 (40%) saying yes. When asked if they had been offered mental health support during appointments, 157 (54%) replied ‘no’. A further question specifically asked these respondents, if they had received mental health support from somewhere else, with 71 (50%) again replying no. There were 20% who had been offered support, with 105 free text answers: 52 (51%) mentioned a psychologist and 15 (14%) mentioned ‘Other’, with a range of answers including still waiting for support, and gradual exposure therapy. The other 30% said they had not needed mental health support. When asked where they had received help from if not during an appointment, there were 54 free text comments, with the highest proportion (9, 17%) citing CAMHS, 7 (13%) saying school or college, and fewer respondents mentioning GP, parent or local support groups.

When asked if their family’s mental health had been impacted by the diagnosis of JIA, 218 (82%) parents said it had impacted them. Of these, 100 (46%) had not tried to access support, 31 (14% however replied yes, and 59 (27%) replied no, they had not been able to access support. Parents reported in 126 (47%) cases that they felt that the JIA diagnosis had impacted their siblings’ mental health, with 100 (46%) of these not trying to access support for help.

Every respondent was asked specifically about issues related to their (or their child or young person’s) JIA diagnosis and whether these had been or are currently a problem (Fig. 1). Overall, 235 (81%) respondents felt that ‘worry about injections’ had been an issue at some point, and 233 (80%) had been or are ‘reluctant to take medications’. Emotions such as ‘Questioning why me’ and ‘Feelings of being different’ also occurred in a significant number of responses, affecting 219 (75%) and 213 (73%) respectively.

Fig. 1

Stacked barchart to illustrate JIA disease specific influences on mental health of young people’s (n = 44) responses only

When the 44 children and young people’s independent self-report data are plotted (Fig. 1), there is a clear discrepancy compared to that of all respondents combined (Fig. 2). For example, only 5% have never had any difficulties in school because of their JIA compared to a result of 27% for parent and parent and child/young person completion together. Additionally, 41% of young people are currently worrying about the future, but have not yet asked for help with this, whereas in the combined result this was much lower at 27% of respondents.

Fig. 2

Stacked barchart to illustrate JIA disease specific influences on mental health, all 291 respondents (Parents/children/young people)

Qualitative data

There were two questions where families could input open text responses, the first asked - ‘any other issues related to managing JIA that they would like to share’; the other asked - ‘whether there was anything else they would like to share about their experience of mental health support within paediatric rheumatology’. For these two questions, there were 187 free text comments, with only 14 from young person self reports. Six themes were identified, each of which will be presented here in turn:

Impact from having JIA

Impact from having JIA was the largest theme, and encompassed three sub-themes: rheumatology specific impact, current mental health and individual needs. Rheumatology specific issues mentioned included: the impact of methotrexate, needle aversion, fatigue, inability to do sports, and pain. Parents particularly talked about the impact of regular injections: “he is only 5 and becoming very angry about needles and tests” and “their anxiety about injections is getting worse”. Parents openly shared their own feelings of helplessness: “at a loss of how best to help and support my child” and “we need help. I have asked, but no real help offered”. Young people who self completed the survey were more inclined to detail the effects of their JIA on their mental health, such as “feeling of loneliness one feels with JIA” and “low mood”. One parent talked about current mental health by highlighting parity of esteem by saying, “our child’s mental health suffered from the onset of symptoms to present day. Ongoing anxiety around school, friendships, loneliness. I believe mental health support should be just as important as physical health”. Some parents highlighted specific individual needs, such as the impact of JIA in conjunction with a concurrent condition, for example “having Autism as well as JIA has been difficult. The struggles of having JIA are amplified by not being able to understand and deal with how you’re feeling”.

Impact upon the family

Not surprisingly, due to the family focus of these questions, parents/carers shared how they are functioning as a family and the effect their child’s diagnosis has had on their own lives. The impact upon parents’ own mental health was detailed within some of the quotes, “parents need support to support their child”, “it caused a marriage breakdown”, “support for parents dealing with how the child is feeling and their reluctance to accept medication, condition etc” and “I feel like as my child is so young there is so many questions, I feel upset about the whole thing but I have to carry on and be strong for my child even when I just ask why this has happened to my baby”.

These two open ended questions gave parents an opportunity to talk about the impact on their siblings. Four parents choose here to add free text comments, for example, “sibling has severe jealousy” and “daughters needle phobia created a needle phobia for her sister!”.

Social impact

There were three sub themes within social impact: Impact upon education, Impact upon employment and Peer relationships. Within the sub theme of education, the role parents adopt as their child’s advocate was emphasised, with parents feeling that they are responsible for imparting information and speaking up when they feel their child is disadvantaged or disbelieved: “Making school aware that mental health worries can happen along with physical illness because our school don’t believe there is any anxiety”and “they moan about her attendance even though they know it is due to hospital appointments. She misses out on attendance-related prizes”.

There were fewer employment comments highlighted, but the ones that were mentioned were done so by parents/carers and highlight the uncertain future, such as “I worry about job capability”. Peer relationships included concerns about: “the impact of peers not understanding and feeling separated from them”, “body image and self harm, relationship problems for teenagers” and “managing JIA and social life, managing JIA while in transition years in school and going to university”.

Crisis mental health

While there were few (11) mentions of children and young people who had tried or openly communicated that they wanted to take their own life, from 11 separate families, these unprompted comments were very powerful and clearly illustrate an urgent need to further support these families. Parents shared “would help if offered mental health support when medication started. Only getting help as took paracetamol” and “suicide attempt 12 months after starting rheumatology medication, currently under CAMHS”.

Gaps in care

Gaps in care was the biggest theme in relation to the question asking “Is there anything else you would like to tell us about your experience of mental health support within rheumatology?” with 45 out of 88 free text responses being attributed to this theme.

There were various mentions of gaps in care resulting in six sub themes: Lack of holistic care, Timely care, Impact due to delay, Lack of understanding from health care professionals, Impact upon transition and Lack of support. Lack of holistic care included concerns such as: “my son has a number of autoimmune conditions and there is a lack of joined up thinking around this”, “difficulties with shared care when both hospitals are hours away from each other” and “services are spread”. Timely care included: “Instant access at time of issues is essential”, “the importance of care when it is needed”, and “I think parents / children should be provided with help via hospital rather than having to wait on a huge waiting list for CAMHS”. Impact due to delay highlighted that: “excellent rheumatology team but think mental health provision should be offered as part of treatment. We had to go elsewhere. This added to the problem by delaying treatment” and “waiting for a diagnosis caused problems”.

An example of lack of understanding from health care professionals includes: “Professionals not believing how much pain the child is in and not believing the symptoms that the parents/child say they have. This leads the child to feel like what is the point in telling anyone because nobody will believe me!”. Impact upon transition was an important point specifically for the young people who completed the questionnaires themselves, which included comments about: “A mid teen diagnosis meant I’m on the cusp of adulthood so got caught between services and never got the school related support you’d get from a children’s hospital”, “remember that teenagers need to be treated differently to younger children in the support they need and issues they face” and “going straight into adult care with no support as a mid-teenager”. Lack of support was the last sub-theme: “never been offered support, told it is normal”, “had help, but didn’t help” and “I’m not clear what is available and what the thresholds for accessing the waiting list/treatment are”.

Good experiences

Some families choose to share their examples of good care, in particular, the support received from paediatric rheumatology charities and other providers: “family days have been invaluable” and “peer support from other parents have really helped”. Examples were also provided of charities who had been particularly invaluable while children and young people waited for help, either from their clinical teams or in the community.