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Abstract
Background Children and young people (CYP) with attention-deficit/hyperactivity disorder (ADHD) face delays in diagnosis and barriers to accessing appropriate interventions. Evidence is limited on how these barriers are perceived by their parents and carers.
Methods Focus group in South London with parents/carers of CYP with ADHD. Data were thematically analysed using an inductive/deductive hybrid approach.
Results Participants (n=8) described the challenge of accessing services within a disjointed, multiagency system for their CYP’s ADHD and broader health needs. They described feeling judged and overlooked by healthcare professionals, which could negatively impact the health, relationships and educational progress of their children. Pragmatic solutions were proposed, including providing parents with information on navigating services at an early stage of ADHD symptom recognition.
Conclusions Parents/carers sought improved continuity of care within and between services. They are a key group for consultation on the development of interventions to improve access for CYP with ADHD.
- adolescent health
- health services research
- child psychiatry
- qualitative research
Data availability statement
Data are available upon reasonable request. The data that support the findings of this study are available from the corresponding author (ER-P) upon reasonable request.
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Background
Attention-deficit/hyperactivity disorder (ADHD) is a neurodevelopmental disorder with a prevalence of 3%–5% among children and young people (CYP).1 Accessing care for CYP with ADHD can involve a network of actors, including parents; paediatricians; psychologists; teachers and general practitioners (GPs). Barriers to access range from a lack of awareness of available services, limited awareness of symptoms by teachers and limited resources within health and social care services.2 Many studies have investigated CYP’s experiences of their ADHD,3 but evidence is lacking on parent/carer perspectives. We conducted a focus group study within a support group of parents/carers of CYP with ADHD, exploring perspectives on barriers to accessing general practice or specialist services for their CYP for ADHD and broader health reasons and strategies for improvement.
Methods
An audio-recorded focus group was facilitated by an academic GP (VP) and researcher (ER-P) in a South London community centre in February 2019. Members of a support group for parents/carers of CYP with ADHD were invited to participate and sent the participant information sheet in advance. Participants were informed that their anonymity would be protected, they could withdraw at any time and asked to provide written consent. A semistructured topic guide prompted an open, exploratory discussion which took just under 2 hours (table 1).
Focus group topic guide
Analysis
The recording transcript was thematically analysed using an inductive/deductive hybrid approach.4 Coding was first performed using a deductive coding framework, derived from themes in the literature,2 with miscellaneous responses interpreted inductively into new codes. Transcripts were independently coded by ER-P and VP then finalised with all coauthors.
Results
There were eight (P1–P8), female participants aged 25–44 years; 50% self-identified as being of white ethnicity, 40% of black ethnicity and 10% as mixed, white and black African.
Central challenges
Parents/carers had to express the needs of their CYP who could struggle to convey the impact of their impairments to healthcare professionals by themselves. This involved in-depth understanding of their children’s experiences at home and school. This quotation relates to a parent and child attending appointments with psychiatrists and GPs:
…he was saying ‘it’s all right, it’s not too bad’ and then…when you put him in a class of 30…how miserable he’s feeling after being excluded… for the eighth time and he doesn’t know why…then I have to ring up…and say ‘actually, he’d like to go back on medication’. (P2)
They discussed the challenge of effectively communicating with healthcare professionals for their needs to be ‘taken seriously’; requiring knowledge of a complex web of services and medical terminology, described as needing an ‘ADHD vocabulary’:
Parents are fighting and…under tremendous mental distress…yet we’re expected to advocate… to be experts… to know how all the systems work and we are left to try and manage our children when they are in school and we can’t even be there… (P4)
Impact on parent–child relationships
Barriers were faced repeatedly from early recognition of symptoms through to CYP’s transition into adulthood. Participants explained the negative impact that frequent discussion of symptoms had on CYP’s self-esteem:
…going through their difficulties again and again…it’s not good for their self-esteem… (P1)
…if you have to go to the GP with your child and sit right there, saying it all again, it’s just going to give them really bad anxiety. (P3)
They discussed experiences of healthcare professionals contesting the legitimacy of an ADHD diagnosis and/or pharmacological treatment and instead feeling judged to be a ‘bad parent’. This could instil feelings of shame and powerlessness when children were not receiving the appropriate care:
…we can only watch helplessly from the side lines as our children are spiralling out of control. (P4)
A disjointed, multiagency system
Participants positioned healthcare services within a broader framework of agencies. They desired integrated care, highlighting the absence of communication between schools, the GP and specialists. They offered various explanations, from ignorance to the deliberate protection of resources:
…there’s no communication between the GP, the specialist services…the schools and… other services, so it’s all disjointed and…there’s ignorance…also an incentive for them to pretend it’s not happening because it would then mean they’d have to allocate resources. (P4)
Barriers and facilitators to accessing healthcare services
Participants discussed barriers to accessing general practice including difficulties with getting appointments, appointment times which conflicted with school and that were inconveniently located. Difficulties were compounded by an already busy family life:
… you have to have quite a lot of spare time available to you to actually get through to the [GP] surgery in the first place, which a lot of parents in complex situations don’t. (P1)
Participants expressed distrust of their GP and preferences to see only specialists for their CYP’s ADHD treatment:
P1: I just didn’t bother with the GP then, I’d just go to [Child and Adolescent Mental Health Services] CAMHS…
P2: I do try and avoid the GP actually…
P3: No, I don’t go there with my boys… They’ve never been to…my GP about ADHD. They’ve gone from school referral to CAMHS…
Where GPs were discussed positively it was to emphasise familiarity with a family’s situation and healthcare over the life course with ease of communication between practice staff and pharmacists:
…most of the doctors… know my situation and they immediately respond to me with anything to do with [my youngest child] and anything to do with myself or anything to do with…my older child. (P5)
Some participants had children with additional health conditions. One parent discussed her child’s diabetes and emphasised that healthcare visits improved once the team who managed his care understood her child and how his ADHD impacted him.
…he’s more comfortable now that they’ve got his diabetes and he knows the team. (P8)
Another participant discussed her difficulties with getting an appropriate referral from CAMHS for her child’s self-harm behaviours. She felt that accessing mental healthcare was immensely challenging unless at a very severe stage, despite the common coexistence of ADHD and other mental healthcare needs.
I would ring up CAMHS, I’d get through on their emergency number and I would speak to somebody… and they would fob me off. (P4)
Proposed solutions
Participants suggested solutions to overcome the barriers that had been raised (table 2).
Solutions to overcome barriers to healthcare access with quotations from participants and level of intervention required to implement change
Discussion
Parents/carers conveyed the frustration of repeatedly dealing with barriers to healthcare access and the impact of these on parent–child relationships. They positioned healthcare within a broader framework of services which they experienced as challenging to navigate. They wished to be understood and listened to by healthcare professionals, especially their GPs. They stressed the value of efficient referral systems for CYP with additional mental health needs and the importance of recognition of the coexisting ADHD diagnosis when attending appointments for other conditions.
Participants proposed solutions for improvement, several of which are already in the National Institute for Health and Care Excellence guidance on ADHD diagnosis and management.5 However, guidance is lacking on the impact of ADHD on accessing care for other health conditions. We recommend further research with parents/carers of CYP with ADHD, ensuring representation of salient characteristics, such as gender, to enhance the implementation of existing guidelines and develop strategies for improvement.
Data availability statement
Data are available upon reasonable request. The data that support the findings of this study are available from the corresponding author (ER-P) upon reasonable request.
Ethics statements
Patient consent for publication
Ethics approval
Ethical approval was obtained from the King’s College London research ethics committee (ref: MRA-18/19-10690).
Acknowledgments
The authors thank the South London support group whose members agreed to participate in this study. In particular, they thank the group’s leader for allowing them to invite members to participate and for all her support of their research.
Footnotes
Twitter @ugm5vp
Correction notice This article has been corrected since it was published online. The layout of table 2 has been adjusted.
Contributors VP conceived of the project. VP arranged and facilitated the focus group with assistance from ER-P. MK guided the approach to analysis. ER-P and VP independently coded the transcript before agreeing on the final codes with additional code verification from MK with JD and PW agreeing on the final themes. ER-P drafted the paper. All authors were involved in interpretation of the results, and read and commented on all drafts, giving final approval of the submitted version.
Funding This study was supported by a Starter Grant for Clinical Lecturers from the Academy of Medical Sciences. ER-P received salary funding from the Starter Grant for Clinical Lecturers from the Academy of Medical Sciences, which was awarded to VP. VP is a National Institute for Health Research (NIHR) academic clinical lecturer.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.