Normal or diseased? Navigating indeterminate gut behaviour.

Introduction Delayed diagnosis of gut disease is a continuing problem, variously attributed to a range of patient, doctor, and health system factors. Gut disease often begins with indeterminate gut behaviours that are hard to classify. Aim This study aimed to investigate delayed diagnosis from the point of view of the patient, or prospective patient. How gut and gut disease was understood, what might prompt them to seek care, and their experiences of seeking care. Methods Using a qualitative design, we interviewed 44 people in New Zealand. Thirty-three had a diagnosis of gut disease, and 11 did not, though some of the patients in this latter group had symptoms. Results Some participants had a smooth trajectory from first noticing gut symptoms to diagnosis. However, a subgroup of 22 participants experienced long periods of troublesome gut behaviours without a diagnosis. For this subgroup of 22 participants, we found people struggled to work out what was normal, thus influencing when they sought health care. Once they sought health care, experiences of that care could be frustrating, and achieving a diagnosis protracted. Some who remained undiagnosed felt abandoned, though had developed strategies to self-manage. Discussion Indeterminate gut behaviours remain complex to deal with and it can difficult for both patients and doctors to assess when a symptom or group of symptoms need further investigation, watchful waiting or the use of other supportive strategies. Effectively communicating with healthcare staff can be a significant problem and there is currently a gap in support for patients in this regard.

Telehealth-delivered naturalistic developmental behavioural intervention with and without caregiver acceptance and commitment therapy for autistic children and their caregivers: protocol for a multi-arm parallel group randomised clinical trial.

INTRODUCTION: Timely access to early support that optimises autistic children's development and their caregiver's mental health is critical. Naturalistic developmental behavioural interventions (NDBIs) and acceptance and commitment therapy (ACT) are evidence-based supports that can enhance child learning and behaviour, and adult well-being, respectively. The traditional face-to-face delivery of these approaches is resource intensive. Further, little is known about the benefit of parallel child-focused and caregiver-focused supports. The aims of this trial are to evaluate the effectiveness and social validity of telehealth-delivered, caregiver-implemented, child-focused NDBI and caregiver-focused ACT when delivered alone and in parallel, on autistic children's social communication and caregiver well-being. METHODS AND ANALYSIS: The study will use a randomised, single-blind clinical trial with three parallel arms: NDBI; ACT and ACT+NDBI. We will recruit a minimum of 78, 2-5-year-old autistic children and their families throughout Aotearoa New Zealand. Support will be delivered over 13 weeks using a combination of culturally enhanced web-based modules and online group coaching. Primary outcome variables include children's social communication/engagement with their caregiver as well as caregiver stress and will be evaluated using a repeated measures multivariate analysis of variance. Outcome variables are assessed at baseline (before randomisation), immediately postparticipation and at 3-month follow-up. ETHICS AND DISSEMINATION: The trial is approved by the Health and Disability Ethics Committee (2022 FULL 12058). The findings of this trial will be disseminated through peer-reviewed journals and national and international conference proceedings regardless of the magnitude/direction of effect. Additionally, data will be shared with stakeholder groups, service providers and health professionals. TRIAL REGISTRATION NUMBER: Australian New Zealand Clinical Trials Registry (ACTRN12622001134718).