Provision of interpreting support for cross-cultural communication in UK maternity services: A Freedom of Information request.

Background: Language, communication and understanding of information are central to safe, ethical and efficient maternity care. The National Health Service (NHS) commissioning board, NHS England, describes how healthcare providers should obtain language support through professionally trained interpreters. Providers of interpreters are commissioned to deliver remote/face to face interpretation across the NHS. Services can be booked in advance or calls can be made in real time. However, women report infrequent use of professionally trained interpreters during their maternity care, often relying on friends and family as interpreters which can compromise confidentiality, disclosure and accuracy. Methods: To determine the demand for, and provision of, professionally trained interpreters in practice, we sent a Freedom of Information (FOI) request to 119 NHS Trusts delivering maternity services in England in November 2022. For the financial years 2020/2021 and 2021/2022, we asked how many women in the maternity service were identified as needing an interpreter, the number and mode of interpreter sessions, and the annual spend on interpreting services. Data were analysed using descriptive statistics. Results: One hundred maternity Trusts responded by 21st April 2023 (response rate 100/119-84 %). Of these, 56 (56 %) recorded a woman's need for an interpreter. Nineteen Trusts relied on documentation in paper notes and 37 Trusts recorded the information on a digital system. From the 37 Trusts where this information could be digitally retrieved, women requiring interpreter support reflected between 1 and 25 % of the annual birth rate of the Trust (average 9 %) and received an average of three interpreter sessions across their pregnancy, birth and postnatal journey. Telephone was the dominant mode used for interpreting sessions, though 11 Trusts favoured face to face interpreting. Financial spend on interpreting services varied across Trusts; some funded their own in-house interpreting services, or worked with local community groups in addition to their contracted interpreting provider. Conclusion: Information obtained from this FOI request suggests that documentation of a woman's interpreting need is not complete or consistent across NHS maternity services. As a result, it is not clear how many women require an interpreter, the mode of provision or how frequently it is provided, and the cost involved. However, the limited information available suggests a failure to provide interpreter support to women at each scheduled care encounter. This raises questions about, the risk of women not understanding the care being offered, and the increased risk of uninformed, unconsented care as women traverse pregnancy and birth. Tweetable: There appears to be failure to provide interpreter support to women at each scheduled maternity care encounter increasing the risk of uninformed, unconsented care.

The GP's role in supporting women with anal incontinence after childbirth injury.

BACKGROUND: Obstetric anal sphincter injury is the most common cause of anal incontinence (AI) for women, which often has profound impacts on women's lives. GPs offer a first line of contact for many, but we know that very few women experiencing AI postnatally report discussing it with their GPs. DESIGN AND SETTING: Qualitative study investigating women's experiences with their GP and GPs' perspectives about providing such care. AIM: The study aims to identify key ways GPs can support women with AI due to childbirth injuries. METHOD: This qualitative study combined two phases: firstly, a series of in-depth interviews with women experiencing AI caused by childbirth injuries (n=41); secondly, focus groups with GPs (n=13) stratified by experience. Thematic analysis was conducted and relevant themes from across the two datasets were examined. RESULTS: Mediating factors in GP care for women with AI caused by childbirth injuries centred around three key themes: Role of the GP, Access and Pathways, and Communication. CONCLUSION: The findings demonstrate multifactorial challenges in identifying the problem and supporting women experiencing AI after childbirth injury within primary care settings. Many GPs lacked confidence in their role in supporting women and women were often reluctant to seek help. Those who did often experienced frustrations consulting with their GPs. In a context where women are often reluctant to ask for help, concerns are not always taken seriously, and where GPs do not routinely ask about AI, potential AI after childbirth injury appears to be often missed in a primary care setting.

What are important areas where better technology would support women's health? Findings from a priority setting partnership.

BACKGROUND: Women's health has historically lacked investment in research and development. Technologies that enhance women's health ('FemTech') could contribute to improving this. However, there has been little work to understand which priority unmet needs should be a focus for women's health technology development. The voices of clinicians and those who experience and utilise these technologies (including those used at home or encountered in clinical settings) are needed to ensure that device development aligns with need, without risking exacerbating or creating health inequities. METHOD: We undertook a priority setting partnership project exploring unmet needs in women's health and well-being where physical technologies or innovations could help. This comprised gathering feedback from: patients and clinicians using both qualitative surveys and discussions; collating and publishing these responses and asking for feedback; evidence checking unmet needs identified, and holding a partnership priority setting event to agree a top 10 and top 20 list of priorities. RESULTS: We generated a 'longlist' of 54 suggestions for areas where better kit, devices or equipment could support women's health. For three, we found evidence of existing technologies which mitigated against that need. We took the remaining 51 suggestions to a partnership priority setting meeting which brought together clinicians and service users. Through discussion as this group, we generated a list of the top 10 areas identified as priorities for technological development and improvement. These included better devices to manage examination, diagnosis and treatment of pelvic pain (including endometriosis), prolapse care, continence (treatment and prevention, related to pregnancy and beyond), menstruation, vaginal pain and vaginismus, point of care tests for common infections, and nipple care when breastfeeding. CONCLUSION: The top priorities suggest far-reaching areas of unmet need across women's life course and across multiple domains of health and well-being, and opportunities where innovation in the devices that people use themselves or encounter in health settings could potentially enhance health and healthcare experiences.

Understanding primary care perspectives on supporting women's health needs: a qualitative study.

BACKGROUND: A consultation for the Women's Health Strategy for England in 2022 highlighted a need to understand and develop how general practice can support women's health needs. AIM: To understand the perspectives and experiences of primary care practitioners (PCPs) about supporting women's healthcare needs. DESIGN AND SETTING: Interpretive qualitative research set in general practice in England. METHOD: PCPs working in general practice settings were recruited through research and professional networks. Semi-structured interviews were conducted via telephone or Microsoft Teams, audiorecorded, transcribed verbatim, and analysed through reflexive thematic analysis. RESULTS: In total, 46 PCPs were interviewed. Participants had a range of roles and worked in a variety of primary care settings. Results are presented within six themes: 1) being alongside a person from cradle to grave; 2) maintaining the balance between general and specialist skills; 3) generalists and specialists combined make more than the sum of their parts; 4) striving for equity in a collapsing system; 5) firefighting with limited resources; and 6) the GP is being cast as the villain. CONCLUSION: The findings show that relationships and advocacy are valued as fundamental for women's health in general practice, and highlight the adverse impact of threats to these on staff and services. Developing specialist roles and bespoke services can foster staff wellbeing and could support retention. However, care is needed to ensure that service configuration changes do not result in clinician deskilling or rendering services inaccessible. Care is needed when services evolve to ensure that core aspects of general practice are not diminished or devalued. GP teams are well placed to advocate for their patients, including commitment to seeking equitable care, and these skills and specialist knowledge should be actively recognised, valued, and nurtured.

Women's experiences of anal incontinence following vaginal birth: A qualitative study of missed opportunities in routine care contacts.

OBJECTIVES: This study aimed to explore experiences of women with anal incontinence following a childbirth injury, and to identify areas of missed opportunities within care they received. DESIGN: This is a qualitative study involving semi-structured interviews. SETTING: Participants were recruited via five hospitals in the UK, and via social media adverts and communication from charity organisations. PARTICIPANTS: Women who have experienced anal incontinence following a childbirth injury, either within 7 years of sustaining the injury, or if they identified new, or worsening symptoms of AI at the time of menopause. MAIN OUTCOME MEASURES: Main outcomes are experiences of women with anal incontinence following childbirth injury, and missed opportunities within the care they received. RESULTS: The following main themes were identified: opportunities for diagnosis missed, missed opportunities for information sharing and continuity and timeliness of care. CONCLUSIONS: Anal Incontinence following a childbirth injury has a profound impact on women. Lack of information and awareness both amongst women and healthcare professionals contributes to delays in accurate diagnosis and appropriate treatment.

Perimenopause and/or menopause help-seeking among women from ethnic minorities: a qualitative study of primary care practitioners' experiences.

BACKGROUND: Each woman's experience of the perimenopause and/or menopause is individual and unique. Research shows women from ethnic minorities often have different experiences from their White peers, and these are not being considered in conversations about the menopause. Women from ethnic minorities already face barriers to help-seeking in primary care, and clinicians have expressed challenges in cross cultural communication including the risk that women from ethnic minorities' perimenopause and/or menopause health needs are not being met. AIM: To explore primary care practitioners' experiences of perimenopause and/or menopause help-seeking among women from ethnic minorities. DESIGN AND SETTING: A qualitative study of 46 primary care practitioners from 35 practices across 5 regions of England, with patient and public involvement (PPI) consultations with 14 women from three ethnic minority groups. METHOD: Primary care practitioners were surveyed using an exploratory approach. Online and telephone interviews were conducted and the data were analysed thematically. The findings were presented to three groups of women from ethnic minorities to inform interpretation of the data. RESULTS: Practitioners described a lack of awareness of perimenopause and/or menopause among many women from ethnic minorities, which they felt impacted their help-seeking and communication of symptoms. Cultural expressions of embodied experiences could offer challenges to practitioners to 'join the dots' and interpret experiences through a holistic menopause care lens. Feedback from the women from ethnic minorities provided context to practitioner findings through examples from their individual experiences. CONCLUSION: There is a need for increased awareness and trustworthy information resources to help women from ethnic minorities prepare for the menopause, and clinicians to recognise their experiences and offer support. This could improve women's immediate quality of life and potentially reduce future disease risk.

The experience of women reporting damage from vaginal mesh: a reflexive thematic analysis.

Background: The UK's 'First do no harm' report highlighted missed opportunities to prevent harm and emphasised the need to incorporate patient voices into healthcare. Due to concerns about, and the subsequent suspension, of vaginal mesh for urinary incontinence thousands of women face the decision about mesh removal surgery. The aim of this study was to explore and understand the experience of living with complications attributed to vaginal mesh surgery so that this knowledge can contribute to improvements in care for those considering mesh, or mesh removal, surgery. Methods: This study was embedded in the 'PURSUE' study which explored the experiences of 74 people with urogynaecological conditions in the UK (30th April 2021-17th December 2021). Of these 74 people, fifteen women reported complications that they attributed to vaginal mesh surgery. We used the six stages of reflexive thematic analysis to conceptualise these fifteen accounts. Findings: Our conceptual model anchors eight themes around two dualities: (1) body parts versus body whole, (2) dominant discourse versus marginal discourse. Our themes indicate that trust can be established through: (1) embodied healthcare that focuses on connecting with patients' lived experience, (2) dialectic communication that recognises patient experiences and remains open to alternative perspectives. Interpretation: This study raises some important issues for education and practice. Our findings can translate to other health settings where treatments aimed to provide care have caused harm. Funding: NIHR Policy Research Programme (NIHR202450).

Exploring healthcare professionals' beliefs, experiences and opinions of family-centred conversations when a parent has a serious illness: A qualitative study.

This study explored healthcare professionals' perceived role in talking to adult patients about sharing their diagnosis with children. Semi-structured interviews were conducted to explore healthcare professionals' beliefs about how families could and should be supported when a parent has a serious illness. Participants were 24 healthcare professionals working in primary, secondary and tertiary NHS services in the UK with adult patients diagnosed with a serious illness. Data were analysed thematically. Many healthcare professionals reported systems to identify patients' family relationships, but this information was rarely used to initiate conversations on what and how to talk to children. It was frequently assumed that someone else in the healthcare system was supporting patients with family communication. Others reported there were more urgent priorities for the consultation or considered that talking to children was a private family matter. However, several professionals did undertake these conversations, viewing this as a central part of their role. Some healthcare professionals felt they had inadequate skills or confidence to raise talking to children with their patients and indicated a need for specific training to address this. The results highlight the importance of systematically documenting patients' relationships with children so that this information can be used to inform ongoing discussions with the healthcare team about what children have been told. Patients consistently report wanting support about how to talk to children and the benefits of effective communication are well documented. Dissemination of this evidence could encourage professionals across all specialities to include family-centred communication in routine patient care. Training resources are needed so that staff feel empowered and equipped to raise these sensitive subjects with their patients.

Benefits and harms adopted by health economic assessments evaluating antenatal and newborn screening programmes in OECD countries: A systematic review of 336 articles and reports.

BACKGROUND: Health economic assessments are used to determine whether the resources needed to generate net benefit from a screening programme, driven by multiple complex benefits and harms, are justifiable. We systematically identified the benefits and harms incorporated within economic assessments evaluating antenatal and newborn screening programmes. METHODS: For this systematic review and thematic analysis, we searched the published and grey literature from January 2000 to January 2021. Studies that included an economic evaluation of an antenatal or newborn screening programme in an OECD country were eligible. We identified benefits and harms using an integrative descriptive analysis, and illustrated a thematic framework. (Systematic review registration PROSPERO, CRD42020165236). FINDINGS: The searches identified 52,244 articles and reports and 336 (242 antenatal and 95 newborn) were included. Eighty-six subthemes grouped into seven themes were identified: 1) diagnosis of screened for condition, 2) life years and health status adjustments, 3) treatment, 4) long-term costs, 5) overdiagnosis, 6) pregnancy loss, and 7) spillover effects on family members. Diagnosis of screened for condition (115 studies, 47.5%), life-years and health status adjustments (90 studies, 37.2%) and treatment (88 studies, 36.4%) accounted for most of the benefits and harms evaluating antenatal screening. The same themes accounted for most of the benefits and harms included in studies assessing newborn screening. Overdiagnosis and spillover effects tended to be ignored. INTERPRETATION: Our proposed framework can be used to guide the development of future health economic assessments evaluating antenatal and newborn screening programmes, to prevent exclusion of important potential benefits and harms.

Unsettling experiences: A qualitative inquiry into young peoples' narratives of diagnosis for common skin conditions in the United Kingdom.

Skin conditions such as eczema and psoriasis are relatively prevalent health concerns in children, adolescents and young adults. Experiences of these dermatology diagnoses in adolescence have hitherto not been the focus of research, perhaps owing to assumptions that these diagnoses are not particularly impactful or intricate processes, events or labels. We draw on a thematic secondary analysis of in-depth interviews with 42 adolescents and young people living in the United Kingdom and, influenced by the sociologies of diagnosis and time, highlight the psychological, emotional, social and temporal complexities involved in their diagnosis experiences. Firstly, we describe how participants remembered, re- and co-constructed their diagnosis experiences during the interview. Secondly, we explore the pace and rhythm of diagnosis, including mis-diagnoses, highlighting the jarring potential for adolescents on being diagnosed, even for conditions typically deemed minor. Thirdly, we consider the ways in which these diagnoses have the capacity to reformulate notions of past, present and future, including projecting into imagined futures and reinterpreting past bodily sensations. Finally, we examine how memories about and the meaning of diagnosis are revisited, revised and potentially replaced as a child or adolescent grows older, and increases their management of their condition and encounters with healthcare professionals. In unsettling an assumption that diagnosis experiences for adolescents of common skin conditions is unproblematic or straightforward, our qualitative analysis critically engages with and contribute to tenets of health research that are of interest to quantitative and qualitative researchers, clinicians and patients.

Experiences of urinary tract infection: A systematic review and meta-ethnography.

AIM: To understand the experience of urinary tract infection (UTI) by synthesizing primary qualitative research findings and developing a conceptual model that illustrates this experience. METHOD: A systematic search of Medline, PsychInfo, Embase, and CINAHL from inception to August 2020 to find qualitative research exploring the experience of UTI. Qualitative evidence synthesis in the form of meta-ethnography was undertaken. Findings are reported in keeping with eMERGe guidance. RESULTS: We included 16 qualitative studies in the synthesis of evidence, providing data from over 1038 participants aged 13-97 years. We developed nine themes: the impact of UTI on my whole body; impact on quality of life, activities, and the associated psychological toll; I know my body and my experience has taught me when I need to seek care; worry and the transition to medicalization; antibiotics are a valuable treatment approach; antibiotics are a last resort; being heard, seen, and cared for with dignity; self-judgment; and the end of the road, a need for information and cure. These themes supported a conceptual model to illustrate the patient experience of UTI. CONCLUSIONS: The conceptual model communicates the wide and varied symptoms of patients' UTI experiences and how they process this and make care decision based on past health experiences. For some, there appears to be a sense of hopelessness and frustration. This model may be used to highlight the need for improvements in diagnostic and treatment pathways. Future research to further understand the nuances of acute, recurrent, and persistent UTI is needed.

Absorbing it all: A meta-ethnography of parents' unfolding experiences of newborn screening.

In a context of increasing international dialogue around the appropriate means and ends of newborn screening programmes, it is critical to explore the perspectives of those directly impacted by such screening. This meta-ethnography uses a systematic review process to identify qualitative studies that focus on parents' experiences of newborn screening published in English-language academic journals from 2000 to 2019 (n = 36). The included studies represent a range of moments, outcomes, and conditions that illuminate discrete elements of the newborn screening journey. We draw on these varied studies to construct a diagram of possible newborn screening pathways and through so-doing identify a critical window of time between the signalling of a positive newborn screen and the end of the screening process. During this critical window of time, families navigate complex emotional reactions, information, and decisions. From an in-depth analysis of this data, we develop the concept of "absorptive capacity" as a lens through which to understand parents' responses to new and emerging information. Alongside this, we identify how the "concertinaing of time" - the various ways that parents experience the expansion and compression of time throughout and beyond the screening pathway - affects their absorptive capacities. This study underscores the need to move away from viewing newborn screening as a discrete series of clinical events and instead understand it as a process that can have far-reaching implications across time, space, and family groups. Using this understanding of screening as a starting point, we make recommendations to facilitate communication and support for screened families, including the antenatal provision of information to parents and accommodations for the fluctuations in parents' absorptive capacities across the screening trajectory.

Navigating possible endometriosis in primary care: a qualitative study of GP perspectives.

BACKGROUND: Endometriosis affects approximately 6-10% of women, with well documented delays between initial presentation with symptoms and diagnosis. In England, women typically seek help first in primary care, making this setting pivotal in women's pathways to diagnosis and treatment. English GP perspectives on managing possible endometriosis have not been previously reported. AIM: To explore what GPs identify as important considerations when caring for women with symptoms that raise the possibility of endometriosis. DESIGN AND SETTING: Qualitative study in English primary care. METHOD: Semi-structured scenario-based telephone interviews with 42 GPs from April 2019 to January 2020, based around a fictional scenario of a woman presenting to primary care with symptoms suggesting possible endometriosis. Interviews were thematically coded and analysed. RESULTS: Managing possible endometriosis in primary care brings challenges. While knowledge and awareness were prerequisites for considering endometriosis, other important considerations were raised. Symptoms suggestive of endometriosis are non-specific, making endometriosis one possible consideration of many. GPs move through a diagnostic hierarchy to exclude sinister causes and utilise trials of treatment as both therapeutic interventions and diagnostic tools; processes which take time. An endometriosis label or diagnosis has advantages and risks. GPs reported sharing decisions about investigation and referral while holding women's priorities as pivotal. These conversations were underpinned by their knowledge of uncertainties and unknowns, including the wide spectrum and unpredictability of endometriosis. CONCLUSION: GPs considerations are more complex than simply lacking awareness. The unknowns surrounding endometriosis matter to GPs. Further research and tailored resources for primary care, where women present with undifferentiated symptoms, are needed.

'Not just a piece of skin in front of you'-a qualitative exploration of the experiences of adolescents with eczema and psoriasis with healthcare professionals.

BACKGROUND: There is little qualitative research in the UK focussing on adolescents' experience of their healthcare providers, and inflammatory skin conditions are a common heath problem in adolescence. AIM: To explore the experiences of adolescents with eczema and psoriasis with healthcare professionals, and to distil the participants' key messages for their healthcare providers. DESIGN: This is a secondary thematic analysis of interviews with adolescents with eczema or psoriasis. PARTICIPANTS: There were a total of 41 text transcripts of interviews with young people with eczema or psoriasis who had given permission for secondary analysis; 23 of the participants had eczema, and 18 psoriasis. Participants were living in the UK at time of interview, and aged 15-24 years old. RESULTS: We have distilled the following key messages from young people with eczema and psoriasis for healthcare providers: (1) address the emotional impact; (2) give more information, with the subtheme and (3) appreciate patient research. We identified the following eczema-specific themes: (ECZ-4) 'It's not taken seriously'; (ECZ-5) offer choice in treatment and (ECZ-6) lack of structure/conflicting advice. Two psoriasis-specific themes were identified: (PSO-4) feeling dehumanised/treat me as a person; and (PSO-5) think about how treatments will affect daily life. CONCLUSION: This qualitative data analysis highlights the need for greater recognition of the emotional impact of skin disease in adolescence, and for more comprehensive provision of information about the conditions. We call for greater sensitivity and flexibility in our approach to adolescents with skin disease, with important implications for healthcare delivery to this group.

Taking charge of eczema self-management: a qualitative interview study with young people with eczema.

OBJECTIVES: To explore young people's experiences of eczema self-management and interacting with health professionals. DESIGN: Secondary qualitative data analysis of data sets from two semistructured interview studies. Data were analysed using inductive thematic analysis. SETTING: Participants were recruited from the UK primary care, dermatology departments and a community-based sample (eg, patient representative groups, social media). PARTICIPANTS: Data included 28 interviews with young people with eczema aged 13-25 years (mean age=19.5 years; 20 female). RESULTS: Although topical treatments were generally perceived as effective, young people expressed doubts about their long-term effectiveness, and concerns around the safety and an over-reliance on topical corticosteroids. Participants welcomed the opportunity to take an active role in their eczema management, but new roles and responsibilities also came with initial apprehension and challenges, including communicating their treatment concerns and preferences with health professionals, feeling unprepared for transition to an adult clinic and obtaining treatments. Decisions regarding whether to engage in behaviours that would exacerbate their eczema (eg, irritants/triggers, scratching) were influenced by young people's beliefs regarding negative consequences of these behaviours, and perceived control over the behaviour and its negative consequences. CONCLUSIONS: Behavioural change interventions must address the treatment concerns of young people and equip them with the knowledge, skills and confidence to take an active role in their own eczema management.

Psychosocial needs of adolescents and young adults with eczema: A secondary analysis of qualitative data to inform a behaviour change intervention.

OBJECTIVES: This study aimed to explore adolescents and young adults' experiences of symptoms related to their eczema in order to determine their psychosocial needs. DESIGN: A secondary qualitative analysis of two data sources collected through semi-structured interviews for two different projects, SKINS project and Eczema Care Online project. METHODS: In total, there were 28 transcripts with adolescents and young adults with eczema having a mean age of 19.5 years available to analyse. Interview data were collected from face-to-face interviews that were recorded and transcribed. Inductive thematic analysis explored data about symptoms and organized according to psychosocial needs. RESULTS: Adolescents and young adults with eczema experience both visible symptoms (such as flaky, dry, and inflamed skin) and invisible symptoms (such as itch, pain, exhaustion, and mental distress) that elicit different psychosocial needs. These psychosocial needs are to (i) be understood; (ii) be perceived as normal; and (iii) receive emotional support. Interviewees described a struggle between wanting their peers and family to understand but take their eczema seriously whilst not wanting to stand out and instead to be perceived as 'normal', which they would define as being perceived as other adolescents. This has implications on behaviours, such as seeking support, avoiding going out, hiding their skin, as well as emotional implications, such as social isolation and feeling anxious and low. CONCLUSIONS: Having a better understanding of young people's experiences and psychosocial needs will provide a framework on how best to support adolescents and young adults when managing symptoms related to eczema. Statement of contribution What is already known on this subject? Eczema has a high impact on children and is considered a burden by children and adults with eczema. However, it is unclear what impact eczema has on adolescents and young adults. Adolescents and young adults with chronic conditions are known to be vulnerable to negative psychosocial outcomes but psychosocial needs and how to best support this age group with eczema are unknown What does this add? Three psychosocial needs were developed from evaluating the impact of visible and invisible symptoms of eczema: The need to feel understood (mostly reflective of invisible symptoms such as itch and pain and visible symptoms such as scratching). The need to be perceived as 'normal': visible symptoms such as flaky, inflamed skin make them stand out in comparison with their peers and a need emerged to blend in. The need for emotional support: adolescents and young adults searched for this from their health care providers, from shared experiences and from online resources. Adolescents and young adults with eczema appear to feel ambivalent about wishing the impact of the condition to be acknowledged whilst wishing the condition to be invisible to others. This ambivalence had further impact on feeling self-conscious, seeking support, and dealing with unsolicited advice.

The impact of arthritis on the educational and early work experiences of young people: a qualitative secondary analysis.

INTRODUCTION: Young people's transition into adulthood is intertwined with the worlds of education and work. Poor health in adolescence has been associated with poorer education and employment outcomes in adulthood. This paper explores the impact of arthritis on the educational and early work experiences of young people with arthritis. METHODS: We undertook a supplementary secondary analysis of a qualitative dataset comprising narrative and semi-structured interviews of 39 young people who had been diagnosed with arthritis in childhood, adolescence or young adulthood. RESULTS: Our findings illustrate how young people living with arthritis are faced with a range of added disruptions and challenges in their educational/vocational lives. There is an important element of resilience associated with the process of making a career choice and acting upon personal aspirations. Appropriate support and flexibility in the workplace/educational setting can enable successful outcomes, but disclosure is not a straightforward process for young people living with arthritis. CONCLUSIONS: It is paramount that health providers consistently and effectively address self-advocacy skills with the young person, particularly during educational and vocational transitions. Alongside this, there is the need to further strengthen the health-school/work interface to ensure that young people living with chronic illness can meet their full potential in adulthood.