Wider health needs in attention deficit hyperactivity disorder from lived and professional experience: a qualitative framework analysis

Abstract Objectives This study aimed to explore the perspectives of people with attention deficit hyperactivity disorder (ADHD), their supporters and primary care professionals (PCPs), on the wider physical and mental health needs of people with ADHD and the support currently available. Design Qualitative semi-structured interviews, analysed using reflexive thematic analysis. Setting Five general practice surgeries across England. Participants Participants with lived experience (people with ADHD and their supporters (n=11)) and PCPs (n=9) (eg, general practitioners and practice managers), recruited via clinical academic networks and previous work packages of this study. Results We generated three major themes in relation to ADHD, using reflexive thematic analysis: understanding health, barriers to health and addressing health. Within these, participants reflected on mental and physical health challenges, as well as wider social difficulties and variability in support offered/accessed. Conclusions This study highlights that health problems in ADHD are complex and rooted both in individual factors (eg, mental health) and social factors (eg, support). This study also highlights the differences in expectations and fulfilment of healthcare.

study questions piloted first?Which members of the research team carried out the interviews?What was the professional background of the interviewers?Did they undertake any interview training?Did the participants have the opportunity to review the transcripts and provide feedback on findings?Did any members of the research team have lived experience of ADHD?
In this small study 'Supporters were recruited via the people with ADHD who participated in the study.20 participants were recruited, consisting of five general practitioners (GPs), five practice managers (PMs), one mental health worker (MHW), six people with ADHD (YP) and three supporters of people with ADHD' This suggests that of the 14 supporters all would relate to only 6 individuals with ADHD.Is this correct?There is no mention of data saturation using this small sample.How was this assessed?Is the framework matrix available for review?
The study was ethically approved but there is no detail about the process of consent.
The researchers state 'The strength of the study is the diverse range of experiences it has captured, recruiting primary care professionals and patients/supporters from varied backgrounds' but give almost zero demographic data.Therefore their diversity cannot be evaluated by the reader.
The data are perhaps overinterpreted, with other explanations not discussed.For example, regarding the conceptualisation of ADHD the authors have described the following extremes: 'the data suggest two processes along a spectrum in which either ADHD does not present specific challenges in healthcare access and utilisation (i.e.our practice provides X, 'as for all patients' or 'for all mental health patients'), or that ADHD-care becomes ultraspecified, such that ADHD is considered in isolation and there are limited opportunities to discuss the multiple health implications of ADHD (i.e.participants who discussed the 'one issue per appointment' problem).'Rather than this being a philosophical or conceptual matter, might it be more related to the role of the worker: that the GP is more conscious of the time allocated to each appointment and the patients waiting to be seenwhile the practice manager can perhaps afford to criticize the time-poor GP?This explanation fits with the examples given: 'A GP practice manager suggested that perhaps clinicians should be more vigilant for clusters of seemingly disparate physical health complaints.'By contrast the perception about the GP: "No.My doctor is very; you go in for one specific thing, and then they just deal with that, rather than acknowledging how much health all is interlinked."So this difference in outlook may have a mundane, practical cause rather than a particular conceptualization leading to ADHD being either ignored and focus being on the other medical problems or the doctor's personal preference to treat ADHD in isolation.
The message overall is important but already well established in (probably) every setting where it has been studiedthat people with ADHD have difficulty getting their health needs addressed.Some solutions would be goodfor example having more consistency in the availability and skillsets of 'social prescribers' who could provide support with developing life skills and navigating the health systems.The given reference of the used method of analysis is confusing.The text describes the use of Byrne (2022) [15, 16] and (Braun and Clark and Gale et al, 2013).In the list of references Braun and Clarke (2006)  The result consists of too many quotes.This way the result becomes too fragmented.What does YP and S mean?You need to clarify more in the quotes.In brackets you can insert a clarification of as for example "they" (patients) or "we" (GPs) for a better understanding of the quote.As a whole convert more of them to describing text.
Table 1.The presentation of Themes and subthemes A subtheme in the table is missing in the result section, Peer Dynamics.Theme description."Their" refers to whom?

Discussion
The discussion needs revision.The discussion fails to appear when lifting aspects to discuss related to your own result and thereafter just write/refer to numbers in the list of references as (28,28,39).

List of references Please provide DOI when possible
Contributions: A reminder.In a qualitative study with inductive approach, you do not generate hypothesis.

Reviewer 1 Comments
Thank you for the opportunity to review this important study.the authors address a serious gap in research and practice -i.e.providing integrative holistic care for individuals with ADHD.The qualitative methodolgy was effective in exposing the problem, the barriers and potential solutions.I am looking forward to the next phase: developing an integrative care plan, using a codesign method with all relevant sakeholders.congratulations on your significant contribution to understanding the real world needs of this large populations.my only reservation is that a COREQ (COnsolidated criteria for REporting Qualitative research) Checklist was not included.I leave this for the editor to decide if it is required Thank you for your praise of our work.We have included a COREQ checklist as you have suggested.

Reviewer 2
There is a lot that is missing about the design of the study.For example the use of study research advisory groups (RAGs): How were they recruited?How much did their views influence the five key areas?How many people per group?
How often did they meet and communicate with the research team?Thank you for this comment.We have now included more detail on our RAGs, and methodology which we hope will provide more insight.
We have now included a reflexive statement.
Methods Section (pages 7-9) In total, 20 participants were recruited, consisting of five general practitioners (GPs), five practice managers (PMs), one mental health worker (MHW), six people with ADHD (P) and three supporters of people with ADHD (S).Demographics of the participants are given in Table 1.
Was there any overlap between them and the research participants?
Were the study questions modified after consultation with the RAGs?Interviews were semistructured and approximately one hour in length, and each participant only participated in one interview.Apart from one interview, with two professional interviewees, all participants partook in oneto-one interviews with a researcher.
Interviews were recorded, transcribed verbatim by a trusted service and deleted.Participants did not see transcripts post-interview.
Interviews were up to one hour long and based on predetermined topic guides.These topic guides reflected the study aims and were developed in conjunction with the study research advisory groups (RAGs), ensuring patient and public involvement and engagement (PPIE).The topic guides were also piloted within RAGs.Two versions were created, with one tailored towards primary care professionals and the other tailored for those with lived experiences (i.e., people with ADHD and their supporters).The topic guides covered five key areas; how people with ADHD access primary care, healthcare support in primary care (including pharmacological and nonpharmacological support), healthcare and support for wider healthcare needs through primary care, information and resources and digital solutions to help manage ADHD, and final reflections.The questions relating to this paper are given in Table 2, whilst the full topic guide is available in supplementary materials.

Research Advisory Group (RAG)
There were two research advisory groups for this study; a healthcare professional group (n=7) and a lived experience group (n=8).Our healthcare professional group consisted of an ADHD specialist nurse, an occupational therapist, three GPs.Our lived experience group comprised of 5 young people aged between 17-25, from diverse ethnic backgrounds across England, and three parents of young people with ADHD.None of the RAG participants took part in the study.
Four meetings for each group were held at approximately 6 monthly intervals through the project.Following RAG involvement, it was noted that particularly our lived experience participants were very encouraging of our questions regarding health and ADHD.
Early qualitative findings from this project were shared with the RAGs, in line with the plans for the further development of this work.

Qualitative Analysis
For this project, we used reflexive thematic analysis, using framework methods in the manner described in Byrne (2022), using a constructionist rather than positivist framework [20][21][22][23].This was undertaken between July and August 2023.
A preliminary framework was developed using an inductive approach to the data.This involved line-by-line coding of initial transcripts by researchers (AP, RG, JW, KB) and code refinement of all transcripts.Data collated under codes relating to perceptions of broader health and healthcare needs in ADHD were identified and reviewed, and a framework matrix was created.Data coded under other codes were reviewed to ensure no relevant data had been missed.Researchers then produced column summaries which were used to generate themes and subthemes relating to this research question.

Reflexive Statement
The professional backgrounds of the interviewers were; clinical academics (JW, TND), student researchers (RG, KB) and research fellow from psychology background (AP).In respect to previous and lived experience, AP is a parent of a young person with ADHD, which, combined with involvement in 92 interviews with young people with ADHD and their supporters (in her role as a researcher) has shaped her approach.She also works closely with and has been involved in 52 interviews with healthcare professionals supporting people with ADHD in secondary care settings.Throughout the study AP held regular meetings with the team to facilitate reflections on underlying assumptions/presuppositions about the sample and topic area.Reflective journals were kept to aid the process of coding and theme generation, by highlighting and separating the personal engagement of researchers with the study and its findings (e.g.clinical academics dealing with criticism of clinical services).
Reflective journals were kept to aid the process of coding and theme generation, by highlighting and separating the personal engagement of researchers with the study and its findings (e.g.clinical academics dealing with criticism of clinical services).

Public Involvement and Engagement (PPIE)
Patient public involvement and engagement (PPIE) was used in the development of the original MAP Study protocol [24], as well as in the development of the topic guide for this qualitative study.
In this small study 'Supporters were recruited via the people with ADHD who participated in the study.20 participants were recruited, consisting of five general practitioners (GPs), five practice managers (PMs), one mental health worker (MHW), six people with ADHD (YP) and three supporters of people with ADHD' This suggests that of the 14 supporters all would relate to only 6 individuals with ADHD.Is this correct?
Thank you, we have now clarified our text to communicate more clearly that supporters (n=3) were defined as people directly supporting the person with ADHD, such as a partner, close friend or relative.There were 6 people with ADHD in the study, and 3 supporters.The remainder were primary care professionals.

Methods (page 7)
Supporters (e.g., parents/friends) were recruited via the people with ADHD who participated in the study.
In total, 20 participants were recruited, consisting of five general practitioners (GPs), five practice managers (PMs), one mental health worker (MHW), six people with ADHD (P) and three supporters of people with ADHD (S).
There is no mention of data saturation using this small sample.How was this assessed?Our purposive sampling strategy was chosen to select information-rich cases.We chose to use the concept of information power, taking into account the specific nature of our Methods (page 9) A preliminary framework was developed using an inductive approach to the data, and assessing information power sample and focussed study aim.As we progressed with analysis, we continued to review the information power in terms of the richness and specificity of material and the contribution of new insights from our data, rather than aiming for "complete description of all aspects of a phenomenon" which is often associated with assertion of data saturation, and which is more closely associated with grounded theory rather than our critical realist approach.We have added text to this effect in the Methods.as analysis progressed (Malterud et al., 2016 ).

Is the framework matrix available for review?
Thank you for this comment.We hope that given our clearer communication of our methods, this is no longer required.If this is still required, this is something that would need to be discussed with other collaborators within the wider study team, as we're sure you can appreciate given the sensitive nature of such data.
The study was ethically approved but there is no detail about the process of consent.
Thank you.We have included a consent statement, and updated our methods.

Methods (Interview Methodology) (Page 7)
Participants' electronic written consent was taken via email prior to interviews and reconfirmed at the time of interview.
The researchers state 'The strength of the study is the diverse range of experiences it has captured, recruiting primary care professionals and patients/supporters from varied backgrounds' but give almost zero demographic data.Therefore their diversity cannot be evaluated by the reader.
Thank you for this comment.We have added further demographic information (including a Table ) as well as included greater information on the diversity of the practices included in this study.
Methods (Page 6/7) "Four of these practices were urban, and one was rural.Three of these practices were in areas of high deprivation, and one of these practices served a large student population.""In total, 20 participants were recruited, consisting of five general practitioners (GPs), five practice managers (PMs), one mental health worker (MHW), six people with ADHD (P) and three supporters of people with ADHD (S).Demographics of the participants are given in Table 1." The data are perhaps overinterpreted, with other explanations not discussed.For example, regarding the conceptualisation of ADHD the authors have described the following extremes: 'the data suggest two processes along a spectrum in which either ADHD does not present specific challenges in healthcare access and utilisation (i.e.our practice provides X, 'as for all patients' or 'for all mental health patients'), or that ADHD-care becomes ultra-specified, such that ADHD is considered in isolation and there are limited opportunities to discuss the multiple health implications of ADHD (i.e.participants who discussed the 'one issue per appointment' problem).'Rather than this being a philosophical or conceptual matter, might it be more related to the role of the worker: that the GP is more conscious of the time allocated to each appointment and the patients waiting to be seen while the practice manager can perhaps afford to criticize the time-Thank you for this comment, and we appreciate that you are engaging with the themes we have raised in our manuscript.In essence, you have highlighted something we hope is evident from the paper, that ADHD does not perhaps marry up well with existing healthcare structures (particularly for adults with ADHD).Some of us are clinicians ourselves, and we are very aware of the time pressures on clinicians that exist when seeing patients in primary care.However, this study is not looking at how people are acting in consultations-we accept, as with any qualitative research, that what people reflect in a qualitative interview would likely be different from their clinical practice anyway.Therefore, in this frame-an interview about approaching patients-we feel that it is noteworthy that there were differences in how different perspectives on health and ADHD were relayed.
Furthermore, as part of our reflexivity, we have to accept that whilst we may disagree with what a participant has said about their GP being for 'one thing', it is not for us to change the meaning of that quote because of our understanding about the healthcare system.
In recognition of this point, we have included a sentence in our discussion Discussion (pages 19/20) Firstly, it is important to note that this data highlights some of the tensions caused by practicing under significant time and resource constraints, and to conclude that GPs need to change/adapt their approach would be overly simplistic.However, given the context of the study and data, they provide some useful insights into understanding how to better integrate mental and physical healthcare within ADHD.
poor GP?This explanation fits with the examples given: 'A GP practice manager suggested that perhaps clinicians should be more vigilant for clusters of seemingly disparate physical health complaints.'By contrast the perception about the GP: "No.My doctor is very; you go in for one specific thing, and then they just deal with that, rather than acknowledging how much health all is interlinked."So this difference in outlook may have a mundane, practical cause rather than a particular conceptualization leading to ADHD being either ignored and focus being on the other medical problems or the doctor's personal preference to treat ADHD in isolation.
to ensure that our point is not read as overly-critical of individual practice working under significant pressure.
The message overall is important but already well established in (probably) every setting where it has been studied that people with ADHD have difficulty getting their health needs addressed.
Thank you for this comment.We agree that there is lots of literature looking at healthcare access, but these primarily look at ADHD-related care.The intersection with physical and mental health needs within ADHD, and how these are viewed from primary care, has not previously (to our knowledge) been addressed in this way.Some solutions would be goodfor example having more consistency in the availability and skillsets of 'social prescribers' who could provide support with developing life skills and Thank you for this comment.This relates back to our discussion of framework development; we cannot intervene without a framework to design interventions on.

Discussion, Page 24
This study is also useful in identifying challenges that could form the basis of future coproduction work by the study authors [51] navigating the health systems.
Related work as part of the MAP study has involved co-production research to review evidence from this study (amongst other evidence) and focusses on identifying simple solutions.This is in process.We have preliminary resources available on our website.https://sites.exeter.ac.uk/mapadhd/coproduction/Ref 9published 2019listed incorrectly 'in press' Thank you.We have corrected this.

Reviewer 3
This is a very important and well needed study with potential.However, the main weakness is the stringency and transparency of the study, and that the qualitative methodological research process needs significant improvement.All methodological aspects must be described for possibilities to replicate the study.Please see COREQ (COnsolidated criteria for REporting Qualitative research) Checklist.
Thank you for this comment.We have completed the COREQ checklist and hope that our methodology is now clearer.Thank you for this comment.We have cited more evidence towards this point.14) There is no reference in the text, and in the References is given BMJ Open 13:e068184, meaning?Thank you for this comment.We are currently waiting for our scoping review to be accepted, and therefore we have put the citation as Under Review.

Scoping review (
Background, Page 5 "Our previous scoping review on psychosocial interventions highlighted the need for a fuller conceptualisation of health and care needs in ADHD, as well as an increased availability and evaluation of interventions (Ward et al, under review)" Aim: Adequate.However, the Purpose/aim is differently formulated in the manuscript.It is important to use the same formulation to avoid that something new is excluded or included.
Thank you for this comment.We have updated the objective in our abstract to provide better unity.
Objectives: This study aimed to explore the perspectives of people with ADHD, their supporters, and primary care professionals, on the wider physical and mental health needs of people with ADHD, and the support currently available.
Moreover, I advise you to use just "experience" or "personal experience" instead of "lived experience" since the latter is associated to specific qualitative approaches/methods.Thank you for this comment.Whilst we accept your point, but in the interest of unifying publications across the MAP study, we would prefer to stick to the term 'lived experience'.We will change if you feel strongly about this, but we hope you can understand our perspective here.
Following aspects (see below) should be clarified in detail to strengthen the trustworthiness (see Lincoln & Guba (1985) of the study and possibility to replicate the study.

Thank you; please see our comments below
Design: A qualitative approach/method.... Clarify your theoretical assumptions and positioning.Inductive/ deductive approach?Manifest/latent level of Thank you for this comment.We have clarified our use of inductive approach and that we approached data with a critical realist framework.

Methods page 9
For this project, we used reflexive thematic analysis, using framework methods in the manner described in Byrne and taking a critical interpretation?References are needed.
realist approach [20,21] This was undertaken between July and August 2023.For details see the MAP study protocol [19].
In brief, a preliminary framework was developed using an inductive approach to the data, and assessing information power as analysis progressed [22] Thank you for this comment.We have provided a short ingress.
Results, Page 10 "From the 19 interviews conducted with 20 participants, three major themes were generated.These have been tabulated in Table 3." The result consists of too many quotes.This way the result becomes too fragmented.What does YP and S mean?You need to clarify more in the quotes.In brackets you can insert a clarification of as for example "they" (patients) or "we" (GPs) for a better understanding of the quote.As a whole convert more of them to describing text.Thank you for this comment.We have changed from abbreviations to fully written out roles for clarity.We have also provided clarity as to who is being referred to where indefinite articles are used.
In respect to converting more of the quotes to describing text, we do not feel that would add clarity to our manuscript, and we would rather allow readers to see the information we were presented with, especially given that this is an exploratory field.We feel that overall this is a question of style, and will accept guidance from the editor on this.

Results (Examples)
"She (Granddaughter with ADHD) went through.." "pinning them (people with ADHD) down" was taken via email prior to interviews and reconfirmed at the time of interview.Participants were compensated for their time with a £25 voucher.RG, TND and AP already had qualitative interview experience.JW and KB therefore received training on the topic guide and qualitative interviewing from AP and RG.The professional backgrounds of the interviewers were; clinical academics (JW, TND), student researchers (RG, KB) and research fellow from psychology background (AP).
Abbreviations: Some need better clarification is given.It is not sufficient to provide an article with how Byrne handled the RTA.What of the analysis processes have you used and how?What is the difference between the TA of Braun and Clarke (2006) and later Braun and Clarke RTA.Please clarify.

Table 1 .
The presentation of Themes and subthemes A subtheme in the table isThank you for this comment.We demoted peer support as a subtheme and forgot to update the table.We See Table 3 (formerly table 1)