The experiences of adolescents diagnosed with functional gastrointestinal disorders: An interpretative phenomenological analysis

Abstract

The aim of this study was to provide a qualitative perspective of adolescents’ experiences of functional gastrointestinal disorders. In-depth semi structured interviews were conducted with eleven adolescents aged 11–16. The transcripts were analysed using Interpretative Phenomenological Analysis. Three superordinate themes were identified: 1) The journey to diagnosis: the good, the bad and the unknown; 2) Making sense of ‘functional’: the search for meaning; and 3) To share or conceal?: the impact of anticipated stigma on peer disclosure. The themes highlighted a complex process of meaning-making, with limited information about their diagnosis impacting on approaches to self-management and peer disclosure. Findings suggest adolescents would benefit from developmentally appropriate information and resources about the biopsychosocial aetiology of their presentation. It is considered that this may lead to greater self-efficacy in self-management of symptoms and reduce potential for perceived and self-stigma. Further implications for clinical practice and future research are discussed.

Keywords

Adolescence diagnosis functional functional gastrointestinal disorders FGID

Introduction

Functional gastrointestinal disorders (FGIDs) define a group of disorders across the lifespan characterised by chronic gastrointestinal symptoms in the absence of identifiable organic pathology. There is no diagnostic test; therefore, they are diagnosed according to Rome Criteria (DiLorenzo & Nurko, 2016) through self-report. Symptoms include (but are not limited to) abdominal pain, bloating, constipation and diarrhoea, experienced in isolation or combination. Common FGIDs during childhood include functional abdominal pain (FAPDs) and functional constipation, however, different FGIDs commonly coexist (Hyams et al., 2016).

There is ongoing debate regarding terminology, namely, that the term functional might be experienced as stigmatising and that it is not specific enough (Drossman, 2016, 2019; Schmulson & Drossman, 2017; Yacob et al., 2020). Consequently, in the Rome IV update for adults, the word functional has been removed from several diagnoses, for example, renaming ‘functional abdominal pain syndrome’ to ‘centrally mediated abdominal pain syndrome’.

There is a small body of research exploring adolescents’ experiences of ‘functional disorders’. Cole et al. (2020) qualitatively explored experiences of functional nausea in adolescent girls and their mothers, identifying themes including nausea interference, body frustration, misunderstanding of symptoms, maternal helplessness and guilt. Exploring experiences of receiving a ‘functional disorder’ diagnosis, Hulgaard et al.’s (2019; 2020) studies revealed adolescents and parents experienced monocausal illness perceptions, including attributing difficulties to physical events (e.g. injury) and rarely employing psychosocial explanations. Other research has shown that a diagnosis which does not have an organic cause (e.g. ‘functional,’ ‘somatic’ or ‘medically unexplained symptoms’ [MUS]) may be experienced by adolescents as confusing, invalidating and stigmatising (Hearn et al., 2020; Moulin et al., 2015a, 2015b). Additionally, these young people are thought to be vulnerable to perceived and self-stigma, given their peers’ representations of their health conditions as non-credible, and the associated impact of this on likeability (Guite et al., 2000). Moreover, experiencing symptoms related to abnormal functioning of the gut can lead to feelings of shame and embarrassment (Chelvanayagam, 2014). Such experiences during the developmental period of adolescence may be particularly challenging, given young people often fear being different to peers (Suris et al., 2004).

The current study explored the experience of receiving a FGID diagnosis during adolescence, how young people made sense of the functional explanation of their symptoms and how they talk about it with other people in their life.

Method

Design

This was a cross-sectional qualitative study using semi-structured interviews and Interpretative Phenomenological Analysis (IPA). IPA was chosen as the theoretical framework and analytic method as it seeks to understand subjective lived experiences, meaning and sense-making (Smith et al., 2009).

Participants

A consecutive sample of participants was recruited from one tertiary paediatric gastroenterology service located in a children’s hospital in England. Children/adolescents are typically referred to the service by their GP or a Paediatrician. They are seen by a Consultant Paediatric Gastroenterologist first and referred to other members of the team, such as the Clinical Psychologist or Dietitian, as required.

Inclusion criteria

• Aged between 11 and 16 years

• Diagnosed with a functional gastrointestinal disorder by a Paediatric Gastroenterologist for at least 3 months

• Able to speak and read English fluently

Exclusion criteria

• A co-morbid organic gastrointestinal disease

• Significant developmental delay or cognitive impairment

• Concern that involvement in the study may increase any aspect of risk

Measures

Interview schedule

A semi-structured interview schedule was developed by the research team. Questions included: How was it receiving the diagnosis of (insert FGID)? What does the word functional mean to you? What thoughts do you have about your future with (insert FGID)?

The Paediatric Index of Emotional Distress (O’Connor et al., 2010)

The PI-ED is a brief, psychometrically robust self-rating scale with 14 questions to screen children aged 8–16 years for symptoms of anxiety and depression and does not include somatic symptoms. A score of 20 or above is used to identify those who may need further support.

Procedure

Consultation

Consultation was provided by an IPA expert, an adolescent patient participation group and an adolescent with functional abdominal pain and their parent. The aim of this was to understand perspectives on the research and gain feedback on the study documents and interview questions to ensure they were understandable, leading to some minor changes of wording.

Ethical approval

Ethical approval was obtained from the Black Country Research Ethics Committee (Reference 19/WM/0235) and the Health Research Authority. Local approval was obtained from the recruiting National Health Service (NHS) Trust.

Recruitment

Eligible participants were recruited during routine clinic appointments or were posted a study pack comprising of participant and parent/guardian information sheets, inviting them to ‘opt-in’ to discuss the research if they were interested in participating. The principal investigator (AW) then contacted them to answer any questions and schedule the study visit.

Data collection

Interviews were conducted by AW between November 2019 and February 2020. Ten participants chose to be interviewed at their home addresses and one at the recruiting hospital. Verbal and written consent was obtained from participants aged 16 and from parents of participants aged 11–15. Verbal and written assent was also obtained for the latter. Participants were reimbursed with a £10 Amazon voucher. Participants completed the PI-ED. Only the participant and AW were present for the audio-recorded interview, which lasted between 28 and 56 minutes (M = 41 minutes). Interviews were transcribed with any identifiable information removed.

Data analysis

Each transcript was analysed following guidelines outlined by Smith et al. (2009), including re-reading the transcript, line-by-line coding, development of emergent themes and exploration of patterns across the dataset.

Quality assurance occurred throughout with supervision from two Clinical Psychologists (AD & JC) working in paediatrics with experience in IPA research. A bracketing interview was completed to bring awareness to AW’s potential biases prior to beginning data collection and data analysis. Additionally, a reflective diary was kept to track reflections of the research process. AW was a trainee at the time of the project and did not have a prior relationship with participants or the recruiting service.

Situating the sample

Participants were seven males and four females aged 11–16 (M = 14 years) attending secondary school. Diagnoses were functional abdominal pain (n = 7), functional constipation (n = 3), functional dyspepsia (n = 2), functional nausea and vomiting (n = 2) and functional nausea (n = 1). Five participants had more than one FGID diagnosis. Time since diagnosis ranged from 3 months to 4 years (M = 13 months). Ten participants identified as White British and one as Black Caribbean. One participant scored slightly above the clinical threshold on the PI-ED (21), with a mean score of 12 across participants; thus, the majority did not demonstrate clinically significant symptoms of anxiety or depression. Each participant has been assigned a pseudonym.

Results

Three superordinate themes were generated (see Table 1).

Table 1.

Participant endorsement of themes.

Superordinate and subordinate themes	Total	Finley	Felix	Maya	Archie	Oliver	Ava	Sophie	Harry	Isaac	Benjamin	Poppy
1. The journey to diagnosis: the good, the bad and the unknown
1.1. ‘They said I’m a mystery’: searching for an explanation at a time of uncertainty	10		•	•	•	•	•	•	•	•	•	•
1. 2. The body shows (di)stress: being introduced to the potential role of anxiety	10		•	•	•	•	•	•	•	•	•	•
1.3. Arrival at ‘an actual diagnosis’	11	•	•	•	•	•	•	•	•	•	•	•
2. Making sense of ‘ functional ’: the search for meaning
2.1. ‘I’ve got gastro… um… what is it?’: understanding the words	11	•	•	•	•	•	•	•	•	•	•	•
2.2. Refuting vs. recognising: the role of self-management	8		•	•		•		•	•	•	•	•
2.3. What is next? Managing unknown and known uncertainties about the future	11	•	•	•	•	•	•	•	•	•	•	•
3. To share or conceal?: the impact of anticipated stigma on peer disclosure
3.1. The imagined self in the mind of others: feeling and being different to friends	10		•	•	•	•	•	•	•	•	•	•
3.2. Rejecting ‘creepy words’: finding the words and strategies for disclosure	11	•	•	•	•	•	•	•	•	•	•	•
3.3. The important role of friends in maintaining a concealed self	8		•		•		•	•	•	•	•	•

The journey to diagnosis: The good, the bad and the unknown

The first superordinate theme captures reflections adolescents had looking back on their experience of awaiting diagnosis.

‘They said i’m a mystery’ (Maya): Searching for an explanation at a time of uncertainty

The onset of gastrointestinal symptoms varied across participants; for some, it was gradual and others more sudden. All described the initial process of seeking professional help, usually from GPs, as being filled with uncertainty, with preliminary tests revealing ‘nothing’s wrong’ (Poppy).

Sophie, Felix and Archie described challenges in meeting multiple health professionals and expressed a sense of implicit pressure and responsibility to monitor and present their experience in an adequate and consistent way, given the importance of self-report: ‘remembering what you told the last doctor, and then like trying to remember what to say’ (Sophie). Most described a lengthy trajectory of investigations, with some describing multiple invasive procedures to determine the cause of their symptoms. This time was described as ‘overwhelming’ (Sophie), and ‘worrisome’ (Felix), while others felt ‘confused’ (Oliver). Conversely, others including Benjamin reflected on optimism and hope ‘it kind of felt like the wheels were in motion’; here, his use of language indicated being on a physical and mental journey he had previously felt was at a halt.

Repeated inconclusive investigations were described as frustrating and scary and uncertainty continued: ‘they say it’s one thing, but then say something different, and then they change their minds.... just like they don’t really understand what it is’ (Archie). As a result, many participants experienced anxiety. For Sophie, it was adults who were uncertain: ‘all the doctors were telling me different things and my parents didn’t know either'.’ ‘Negative’ results could be experienced with relief, but also confusion, as uncertainty and search for the ‘answer’ or ‘cause’ continued when ‘everything was normal’ (Benjamin). This experience was incongruent with adolescents’ expectations that health professionals would identify a cause and ‘fix it’ (Benjamin).

The body shows (di)stress: Being introduced to the potential role of anxiety

Most adolescents described being introduced to the potential role of ‘stress’ or ‘anxiety’. For some, this was held in mind from the beginning ‘(The doctors were) checking to see if I had something wrong with my body or (I was) just like nervous and stuff like that’ (Archie), whereas for others, this occurred upon exclusion of possible medical causes. For the latter, this gradual process occurred in the context of professionals questioning important aspects of their life, including family, friendships, school and puberty. For most, the proposed working model and understanding did not come as a surprise, and these adolescents were generally receptive to this explanation.

Whilst the inclusion of anxiety in the formulation came to be partly accepted by many, this was a process and felt somewhat surprising initially: ‘They (doctors) thought it’s just stress... I was a bit shocked like at first... I went “I’m never stressed though” (Isaac). Isaac’s use of the word ‘just’ may reflect minimisation of his experience or of the significance and impact of stress, while his apparent shock may imply incongruence between the severity of his difficulties and his own view of stress. For some, the idea of anxiety or stress being at least partially accountable for their physical symptoms was not compatible with their self-view: ‘All my first questions to the doctor was like ... um ... “Can you be stressed without knowing?” because I’m generally just like pretty easy going, chilled out ...the most fitting word is probably more like anxiety ... um ... yeah’ (Benjamin). Here, Benjamin interestingly rejects the notion of ‘stress’ for his preferred term of ‘anxiety,’ perhaps demonstrating how labels and terms can be important to adolescents.

Arrival at ‘an actual diagnosis’

Participants varied in both the meaning-made and emotional reaction to being informed of their functional diagnosis. Whilst all were able to reflect on the conclusion of their investigations, for some, diagnostic meetings were described as brief or insignificant ‘I was only in there for about 10 minutes’ (Archie), ‘nothing memorable’ (Poppy) ‘not a big issue’ (Oliver). For others, reaching this conclusion was defined as an important and generally positive experience concluding a lengthy period of uncertainty: ‘I was confused, would it be a serious thing, or would it not be? then obviously I got told, so it put my mind at rest’ (Sophie).

Three accounts explicitly connected this ‘arrival’ to helping them with ‘being believed’ in school, which afforded support and teachers’ understanding of their fluctuating absence: ‘I’veve actually got the diagnosis, and no one will think I’m making it up now’ (Sophie). Similarly, for others, a diagnosis meant medical confirmation, which was experienced as validating in what had been an uncertain period in their lives. Whilst such recognition was apparent in other narratives, some participants hinted at a continued lack of clarity: ‘(I felt) a little bit validated… there was a reason behind it I suppose, but then it doesn’t mean there’s a reason. I mean, what is the reason?’ (Felix). Whilst these examples illustrate how most adolescents recognised their investigations had reached a conclusion by receiving a diagnosis of a FGID, for others there was still a sense of the unknown. For example, for Harry and Felix, the arrival at their diagnosis was reflected upon as a holding name for a condition yet to be determined, with both participants seemingly unaware that their investigations had concluded: ‘They will hopefully find out what it is and stuff’ (Harry). Meanwhile other participants including Poppy suggested ‘I wish there was a bit more to it…,’ which suggests a level of dissatisfaction and being bound to a possible alternative outcome.

Making sense of ‘functional’: the search for meaning

This superordinate theme encapsulates the process of meaning-making after diagnosis, which included finding words to explain it, perceptions of coping and illness self-efficacy and contemplating the future.

‘I’ve got gastro... um... what is it?’: understanding the words

No adolescent used their diagnostic label(s) when speaking about their functional diagnosis within the research interview: ‘I obviously got the diagnosis of... what it was’ (Sophie). For Sophie, the word ‘it’ was used throughout which may be a way of distancing herself from her diagnoses, representing a lack of understanding or function as a strategy to conceal lack of understanding. She later reflects ‘it wasn’t explained what these big words meant’. Other participants did not know the name of the diagnosis they were given: ‘I don’t really know what the main name is’ (Poppy). All adolescents described instinctively developing symptomatic labels, such as ‘stomach issue’ (Harry; Benjamin) and ‘problems with going to the toilet’ (Felix). Poppy explained this was ‘instead of worrying about a big name’.

When explicitly asked about the meaning of the word functional to them in the context of their diagnosis, most participants had difficulty developing a coherent explanation. None could recall any explanation given and tried to apply other uses of the word functional. Most felt their diagnostic label was not a well understood or known term, which subsequently facilitated an individual process of understanding the words for themselves. When drawing on everyday understandings of the term functional, this presented most young people with a further sense of confusion and lack of clarity about what it meant for them, particularly given the contradiction between what it means to be ‘functioning’ as in working correctly, and its place within this diagnosis: ‘but I don’t tend to function… (the diagnosis) didn’t make that much sense’ (Sophie).

Refuting versus recognising: the role of self-management

Adolescents varied in their health appraisals, either refuting or recognising the role of self in their illness development and management. For some, there was a distancing of the self from the body or gut as a separate unpredictable entity ‘(I have) no bodily control’ (Ava). For many, this led to feelings of being overwhelmed, with consequential disruptions to normal adolescent life. Most of these adolescents sought biomedical and dietary advice with the hope of ‘get (ting) it (gut) back on track’ (Finley), although this advice and intervention often had limited effects.

On the other hand, eight participants described developing an increased awareness of the role of self and subsequent psychological factors including anxiety, low mood and stress on their symptoms, for example: ‘when I get sad...my chest hurts a bit’ (Maya) and ‘my stomach blocks up when I’m worried’ (Ava). This process, particularly for older adolescence, led to a sense of personal responsibility and agency to manage and control both their physical and emotional health: ‘(I’ve) got to keep a positive mindset to calm my pain down’ (Isaac, 606). Alternatively, for others, this led to internal pressure to learn how to cope and manage: ‘I guess when it’s sort of like in your head, and in a sense it’s in your control, everyone thinks it should be easy, but then in one sense it’s more challenging because it’s only you who can sort it out’ (Benjamin).

Five adolescents were referred to psychology following diagnosis. Some initial apprehension was reported mainly regarding the perceptions of others (see Section The Imagined Self in the Mind of Others: Feeling and Being Different to Friends). For most, the referral was deemed an acceptable part of their ongoing treatment plan, explained and understood as an opportunity to learn skills to manage emotions which can contribute to gastrointestinal symptoms.

What is next? Managing unknown and known uncertainties about the future

All adolescents were tentative in thinking about the future with a functional diagnosis. For some, there was hope that symptoms would improve with age: ‘I think it’ll get better when I get older’ (Ava). These participants perceived a permanence to the diagnosis, but also that they would learn adaptive coping strategies, providing hope that their condition will be ‘a background thing’ (Finley). Typically, those young people who understood their condition as due to stress/anxiety felt more hopeful that they would learn ways to manage: ‘I’m hoping to get rid of it’ (Isaac). Here, appraising their condition as temporary, contingent on their coping strategies appeared to help. Seven adolescents seemed aware of the potential for future difficulties and symptoms worsening related to stressful life events, also demonstrating awareness of gut-brain interaction processes. For example, ‘I can see it getting a bit more worse...I’m quite stressed lately’ (Poppy); and ‘it might come back... related to life stuff’ (Benjamin). Conversely, some participants were less hopeful and unclear about the future: ‘I knew what it meant, but I didn’t know at the same time. I was like “this is scary! Does this mean I have to go to the hospital all the time now?”' (Sophie).

To share or conceal?: the impact of anticipated stigma on peer disclosure

This superordinate theme reflects the challenges in sharing diagnoses and associated symptoms with others.

The imagined self in the mind of others: Feeling and being different to friends

Nearly all adolescents reported experiencing anxiety about being judged and rejected following disclosure of their FGID and the associated symptoms, which could disrupt opportunities for peer connectedness. Most reflected on their experiences of feeling different to peers: ‘none of my friends have these problems’ (Sophie), viewed as a risk factor for being ‘othered’ and bullied. This was considered as a reason for them to not disclose.

None of the five participants referred to psychology had told their friends, anticipating this would make them be viewed differently: ‘When people hear psychology, they think “Oh! There’s something wrong with your brain or something!”' (Sophie), as well as holding the further risk of it being spread beyond their confidantes. Ultimately these factors led to concealment beyond immediate family members.

Rejecting ‘creepy words’: Finding the words and strategies for disclosure

All adolescents considered the ‘right’ and ‘safe’ words to use during decision making about illness disclosure to reduce fears of peer rejection: ‘“tummy pain”I’d be able to tell them about that. Because lots of people get tummy pain’ (Ava). Here, Ava’s use of the label ‘tummy pain’ serves as a protective strategy to reduce further questioning and reduces the dissonance felt between self and others. Benjamin also opted for descriptive terms that others may be able to relate to: ‘I kind of prefer like “cramping” or “butterflies on steroids.”’

No participants described perceiving the word ‘functional’ as a stigmatised term, with Benjamin the only participant to explicitly use the word stigma in relation to public perceptions of mental health conditions. Despite this, the internal process of labelling their symptoms was discussed often across participant accounts, perhaps highlighting an awareness of the presence of societal stigma and thus finding words to reduce the risk of difference that diagnostic labels can generate. For example, Sophie implies a sort of ‘unsaid’ term of engagement when disclosing her condition to others: ‘It’s like a bit confusing to like to know exactly what I should tell them... what I should say or what I shouldn’t’ (Sophie).

The important role of friends in maintaining a concealed self

Whilst all adolescents spoke about how friends did not know the exact diagnostic label, some described sharing symptoms with friends and in relationships on the condition this was kept concealed from others: ‘as long as they (friends) can keep it a secret’ (Maya). For some, feelings of trust and existing friendships were considered protective against the fear of negative social reprisal. Furthermore, a burden could be felt by not disclosing. For example, Isaac explained his decision making around telling his girlfriend: ‘if I kept it a secret it was going to be a big weight on my shoulder.’ For others, concealment was an active task in keeping their struggles concealed ‘I sometimes have to make up lies so they don’t know’ (Ava). Here, and throughout Ava’s account, was an overwhelming anxiety about having to explain why she was away from school, and family narratives of ‘the poo-ing problem’ may have contributed to feelings of shame and the need to conceal. For some, the reason to not disclose was partially due to a belief that others could not help: ‘it’s not going to really change anything if I just say, “by the way, I’m hurting quite a lot right now”’ (Felix).

Discussion

The three superordinate themes that emerged from the data will be contextualised in the wider research and theory below.

The journey to diagnosis: The good, the bad and the unknown

Whilst some positive aspects of the journey to diagnosis were cited, including holding hope for a cure and experiencing validation, uncertainty underpinned most narratives and shaped participants’ experiences. Such experiences are echoed in the limited literature exploring adolescent and family experiences of functional disorders, including feeling ‘in-limbo’ within the professional system during diagnostic investigations (Hulgaard et al., 2019). In the absence of certainty, participants created their own understandings of their symptoms as is purported to occur in the model of perceived uncertainty in illness (Mishel, 1988). Mishel also describes health professionals as a ‘credible authority’, whereby feelings of trust and confidence in the relationship are important in reducing uncertainty; however, participants’ confidence in the process was challenged here through professional uncertainty, which in turn served to increase their worry.

Whilst psychosocial factors cannot wholly account for FGIDs (Talley, 2020), research has shown that the biopsychosocial framework of FGIDs and MUS is often not communicated effectively. This can lead to patient refusal of psychological interventions (Kirmayer et al., 2004; Van Tilburg, 2020). One reason for the acceptability of such factors in the current study may be the integrated model of care provided at the recruitment site whereby clinicians are able to effectively communicate the role of psychosocial factors in FGIDs and offer interventions, such as Cognitive Behavioural Therapy. Whilst this cannot be confirmed by this study, this process is increasingly believed to be critical in modifying both child and parent FGID symptom beliefs (Van Oudenhove et al., 2016; Van Tilburg, 2020).

Making sense of ‘functional’: The search for diagnostic meaning

Most participants had difficulty understanding and articulating what a functional diagnosis is. Some related it to the term ‘functioning’, their body as either ‘working’ or not. Others grappled with the idea of a diagnosis without any underlying pathology. Such findings are supported in the adult MUS literature, where patients describe resistance to psychological explanations of their suffering (Nettleton, 2006).

Some participants believed self-management was important within a psychologically informed model, which led to increased mastery of strategies for managing symptoms and greater self-understanding, whereas some refuted this idea, with greater focus on professionals’ responsibility to identify biomedical causes and cure(s). The common-sense model of health and illness (Leventhal et al., 2003) is a transdiagnostic model which echoes these principles. It provides a framework for participants’ perceptions that the cause of their symptoms directly influences their perceived controllability, which impacts on self-management and coping strategies. This model has been drawn upon in research with adults with FGIDs, where poor illness coherence as well as low self and treatment control exist (Xiong et al., 2018). Such findings prompt interest in what opportunities there are to modify such perceptions in paediatric services, with consideration of adolescent’s increasingly developmentally sophisticated concepts of both health and illness (Eiser, 2013).

Interestingly, some older participants described aspects of a developed awareness of the brain-gut axis, which could be understood as a process of positive psychological personal growth in the context of adolescent development. These ideas are somewhat supported by IPA studies in adult irritable bowel syndrome (IBS) (Mohebbi et al., 2017; Ung et al., 2013) which have found themes of ‘taking control’ through body knowledge, enabling self-acceptance and personal growth. Preliminary findings have also indicated that emotion awareness and expression training improve IBS symptoms and quality of life (Thakur et al., 2017); however, these programmes have not yet been explored with adolescents.

To share or conceal?: the impact of stigma on peer disclosure

Participants demonstrated implicit awareness of socially implicit rules around gut functioning. Concerns about being different to peers were consistent with existing research (Laird et al., 2020) where some participants perceived stigma from others due to feeling different, for example, experiencing stress/anxiety differently to others, experiencing ‘embarrassing’ symptoms, missing school and (where relevant) being referred to a psychologist. Experiences of internalised or self-stigma were also apparent.

Greene (2015) health disclosure decision making model describes how individuals carefully consider what information to provide, when and how to share, and possible outcomes of doing so. Whilst little is understood about moderators of disclosure decisions for individuals with FGIDs, the current findings suggest participants’ strategies for disclosure included finding ‘safer’ words (based on ‘relatable’ gastrointestinal symptoms) to use with close friends.

Clinical implications

Findings from the current study indicate conceptual difficulties in adolescents’ understanding of the meaning of the word ‘functional’ in their diagnosis. There are likely to be several reasons for this, including brevity of medical consultation time, limited focus at medical schools learning how to explain FGIDs to patients (Finset, 2018) and the current scarcity of information aimed at adolescents. Given that a lack of diagnostic understanding is likely to impact on illness identity, self-management, disclosure, as well as have the potential for greater healthcare costs through increased consultations, particular consideration of this process should be considered a priority for Clinical Psychologists working within gastroenterology services. Here, they can hold multiple roles, including providing training to colleagues on developmentally appropriate explanations of complex medical information, supporting with the development of information resources (which could ease the pressure on healthcare professionals during consultations), supporting families to engage with biopsychosocial formulations of their experiences and motivating them to engage in self-help strategies. Additionally, they can support the promotion of multi-disciplinary working. One such example could be a family education class facilitated by a Gastroenterologist and Clinical Psychologist. This would be a resource-light intervention to facilitate understanding, as well as potentially normalise the psychological difficulties often associated with FGIDs, such as anxiety. Such interventions could also reduce psychology waiting lists as early intervention can be key in reducing later psychological distress, functional impairment and healthcare utilisation (Kinsinger et al., 2015; Palsson & Whitehead, 2013).

Finally, the current study has implications for how young people in need of psychological input are identified. These include exploring cognitions around self-efficacy, anxiety and stigma. The Felt Stigma and Concealment Questionnaire, (FSC-Q; Laird et al., 2020) recently been developed for use with paediatric FAPDs, could be used to identify these constructs and inform referral decision-making.

Methodological considerations

Key strengths of this study include exploring a novel population, service user consultation and analytic rigour. The study used a single recruitment site and whilst this facilitated sample homogeneity, likely introduced some systematic bias with regard to a lack of socio-economic, geographical and ethnic diversity within the sample. This is particularly important given the recognised impact of culture on explanatory models of illness and expectations of health professionals in FGIDs, which has been shown to create potential for miscommunication and poorer health outcomes (Sperber, 2020).

Future research

Research evaluating the clinical recommendations outlined above would inform and guide Clinical Psychologist working with gastroenterology teams. Additional research demonstrating the value of their presence within MDTs and efficacy of psychological interventions would help secure funding to expand provision within services, which are often under resourced (Keefer et al., 2018; Wong et al., 2021).

The current findings provide some support for the presence of stigma related to FGIDs and identify some avenues for further exploration, including the potential role of self-efficacy as a mediator between perceived and internalised stigma. If the experience of stigma is quantitatively supported, and/or garners additional qualitative support, further research could help develop a theoretical model of characteristics which leave adolescents with FGIDs vulnerable to stigma and suggest how to support young people to reject, rather than internalise, stigma.

Additionally, it would be valuable to explore health professionals’ perceptions of the young people who experience FGIDs, experiences of explaining diagnoses and decision-making for psychology referrals.

Conclusions

This research provides an important and novel insight into the experiences of adolescents and their understanding of the word functional in the context of their FGID diagnosis. Whilst the integration of a diagnosis into adolescents’ identity is an inherently individual process, findings suggest they may benefit from a more comprehensive explanation of their condition from health professionals. These conversations should hold in mind models of child development, illness representations and self-management, possible risks of stigma and the impact of this on disclosure. It is hoped that these findings and recommendations, alongside further research, will benefit the quality of care for this population.

Footnotes

Acknowledgements

The authors would like to thank the participants, the recruiting team and Jamie Ho for her support.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iDs

Amy Woodham

Annabel David

Author biographies

Dr Amy Woodham (DClinPsy, MSc, MEd, BA Hons) is a Clinical Psychologist working in the paediatric cardiology psychology service at University Hospitals Bristol and Weston. Her research interests include transition between child and adult health services and adolescents’ understanding of health diagnoses.

Dr Annabel L David (DClinPsy, BSc) is a Senior Clinical Psychologist at the Oxford Children’s Hospital working with children and adolescents with gastrointestinal conditions. Her research interests focus on the impact living with chronic health conditions has on young people and their families, and improving access to high quality, effective, and acceptable psychological interventions.

Dr Myra Cooper (DPhil, MPhil, MA Hons) is a Clinical Psychologist who works as Senior Research Tutor at The Oxford Institute of Clinical Psychology Training and Research. Her primary research interests are in eating and related disorders, both in adults and young people. She also has a range of quantitative and qualitative research interests in other areas of clinical psychology, including clinical health psychology.

Dr Jacinta Cordwell (DClinPsy, MSc, BSc) is a Consultant Clinical Psychologist working clinically within paediatric psychology and neonatal intensive care at Oxford University Hospital NHS Foundation Trust and the Thames Valley and Wessex Neonatal Operational Delivery Network. Her clinical and research interests span child clinical health psychology, trauma and perinatal and infant mental health.

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