Sarah Hampton

Purpose: Autistic people experience high rates of anxiety and depression, yet an evidence-based understanding of how and why these difficulties first develop is lacking. By centring autistic young people’s accounts, this study aims to understand how interactions between autistic people and their environment throughout childhood and adolescence give rise to anxiety and depression. Methods: Twenty autistic young people aged 10–18 and 30 parents of autistic young people aged 5–18 completed semi-structured qualitative interviews about experiences of anxiety and depression. Results: Framework Analysis identified three themes. External demands and pressures : Participants described the weight of pressures to meet non-autistic standards within school, social and sensory environments. Autonomy and control : Young people struggled with environments not under their control. They benefited from a balance of structure and autonomy within home and school settings. Safety , trust and predictability : Trust and acceptance from others (such as family, peers, teachers and professionals), access to safe places (such as home and nature), and engaging in interests were important protective factors. Conclusion: Autistic young people can feel pressure to meet non-autistic demands, impacting mental health. Factors such as academic expectations, parenting styles, understanding of autism among family, teachers and peers, and low sensory demand spaces may be important targets for intervention.

Background: The UK Fire and Rescue Service (FRS) routinely deliver Home Fire Safety Visits (HFSVs) in people’s homes. HFSVs offer support with fire safety and a range of health-related issues. This study aimed to explore the perspectives of those delivering and designing the HFSV service. Methods: Twenty eight members of the FRS who deliver HFSVs and service leaders involved in HFSV service-design were interviewed. Data were analysed thematically. Results: Participants described a cultural shift within the FRS from response to prevention and public health work. Most felt positively about this change, though some reported difficulty adjusting to their new role. Working with other services was seen as integral to the HFSV service due to the links between fire risk and other facets of health. However, participants felt the FRS were expected to plug gaps in other services, despite not always feeling equipped to do so. Challenges were identified in reaching and supporting underserved groups (e.g. mental health issues and dementia). Conclusions: HFSVs could address a range of health-related needs. However, whether the FRS should be expected to fill gaps in other services needs further exploration. Supporting underserved groups via HFSVs is important and warrants further investigation.

This report summarises the research, as commissioned and as undertaken, and lessons learnt in the ‘Do Safe and Well Visits delivered by the Fire and Rescue Service reduce falls and improve quality of life among older people’ randomised controlled trial. Due to challenges conducting the study, we were unable to recruit sufficient participants to the trial. Background: Fire and rescue services in England routinely carry out Home Fire Safety Visits which aim to reduce risk of fire, support independent living and improve quality of life. The visits include a person-centred assessment and providing general advice on health-related topics such as preventing falls. Planned objective: To assess the effectiveness and cost-effectiveness of Home Fire Safety Visits (also known as Safe and Well Visits) to reduce falls and improve quality of life in older adults living in the community. Design, setting and participants: We designed a multicentre, randomised controlled trial with economic and qualitative evaluations, involving two fire and rescue services in England, to recruit 1156 community-dwelling adults aged 65 years and over. Interventions: All participants could continue to access routine care from healthcare professionals and were provided with a falls prevention leaflet as part of the trial. The intervention group were additionally offered a Home Fire Safety Visit. The usual care group were offered a visit after they had completed the trial. Blinding was not possible. Participants were randomised 1 : 1 using a secure web-based system. Main outcomes measures: The primary outcomes were (1) the number of falls per participant and (2) health-related quality of life (EuroQol-5 Dimensions, five-level version) over 12 months from randomisation. Secondary outcomes included fire risk-taking behaviours, loneliness, fear of falling and time to first fall. The planned economic evaluation comprised cost–utility and cost-effectiveness analyses. The qualitative study was designed to examine intervention fidelity and acceptability. Results: It proved impossible to conduct the trial as planned in the current research landscape. We faced significant delays in setting up and starting recruitment, in large part due to this coinciding with the start of the COVID-19 pandemic. Obtaining regulatory approval took longer than anticipated. Additionally, we were unable to access general practitioner registration data to identify participants as planned and so we had to use Consumer Classification Platform data to identify potential households to send study invitations to. This resulted in a less targeted and non-personalised mail-out as this is not patient-level data so the householder names were unavailable. Ultimately, recruitment was much lower than expected. In total, 237 participants were assessed for eligibility and 63 randomised (intervention, n = 32; usual care, n = 31). The Home Fire Safety Visits were delivered as planned to both groups; however, the planned statistical and health economic analyses could not be conducted due to the limited data. Data from the qualitative evaluation indicated the intervention was largely acceptable to staff and service users. Conclusions: Conducting trials in this setting is currently extremely challenging. To facilitate future research, we recommend an urgent review of research governance issues related to the types of personal data that can be accessed and used for research. This review should aim to provide support and avoid creating additional obstacles to research in this area. Future work: The evidence for the effectiveness and cost-effectiveness of Home Fire Safety Visits remains inconclusive. Research governance in local authorities needs urgent review. Trial registration: This trial is registered as Current Controlled Trials NCT 04717258. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme (NIHR award ref: NIHR128341) and is published in full in Public Health Research; Vol. 13, No. 7. See the NIHR Funding and Awards website for further award information.

Background: Transitions from hospital to home are a risky time for older people (aged 75 years and older). Unplanned and often avoidable hospital re-admissions are therefore high in this group. This research aimed to understand if increased involvement of older people in their care in hospital would improve the safety and experience of care transitions. Objectives: In six work packages we set out to: understand patient and carer involvement in and experience of care transitions explore staff experiences of delivering good transitional care develop and validate a new measure (the Partners at Care Transitions Measure) to assess patient experience and safety during care transitions create a theory and logic model to inform the co-designed transitions intervention followed by a formative evaluation test the feasibility of delivering a trial to evaluate the intervention evaluate the clinical- and cost-effectiveness of the transitions intervention with a parallel process evaluation. Design: Qualitative methods (1 and 2), literature reviewing, Delphi techniques and validation testing (3), co-design (4), cluster feasibility trial (5) and cluster randomised controlled trial (6). Settings: National Health Service acute hospital trusts, general practices, patients and carer homes across the north of England, United Kingdom. Participants: Patients aged 75 years and older and their caregivers. National Health Service staff working in acute National Health Service trusts on wards delivering the intervention. Intervention: ‘Your Care Needs You’ intervention to support patient and carer involvement in hospital care in preparation for returning home. This comprised fixed components: a booklet, an advice sheet for managing at home and a film; and flexible components: ongoing staff involvement of patients through multiple approaches. Implementation included a nominated lead, staff training and posters. Main outcome measures: Primary outcome was unplanned 30-day hospital re-admissions. Secondary outcomes included: unplanned 60- and 90-day hospital re-admissions; quality of transition; health-related quality of life (EuroQol-5 Dimensions, five-level version); and self-reported healthcare resource use. Data sources: National Health Service Secondary Use Services data and Hospital Episodes data for work package 2 and routinely recorded National Health Service acute trust hospital data on re-admissions for work packages 5 and 6. Review methods: Systematic narrative review for preparatory work on patient involvement; narrative meta review of transitions interventions; scoping review of transitions measures. Results: Work package 1: Six themes relating to patient experience of care transitions. Patient involvement in hospital care found to be challenging ‘work’ that was often invisible to staff. Work package 2: National Health Service staff reported that high-quality care transitions were facilitated primarily through trust and strong relationships. Work package 3: A measure of quality and safety of care transitions (Partners at Care Transitions Measure) developed and validated with good internal reliability and internal consistency. Work package 4: An intervention called ‘Your Care Needs You’ that required revisions to support implementation. Work package 5: Primary outcome data were collected for 90% of participants. Follow-up questionnaire response rates were lower than anticipated (75% vs. 85%). Information on the acceptability, usability and implementation of the intervention informed iterations to the intervention and implementation package. Work package 6: 4947 participants from 39 hospital wards took part in the main trial. Six hundred and thirteen participants from 35 wards took part in the nested cohort. No differences were observed in the primary outcome of unplanned re-admission (Y/N) at 30 days post discharge [17% experienced re-admission within 30 days in the ‘Your Care Needs You’ group, 18% in care-as-usual, odds ratio: (0.93; 95% confidence interval, 0.78 to 1.10; p = 0.372)], and also at 60 and 90 days post discharge but all results were in favour of the intervention with a reduction in total re-admissions of 13% over 90 days [incidence rate ratio: 0.87 (0.76 to 0.99), p = 0.039]. There was a statistically significant reduction in Partners at Care Transitions Measure safety concerns at 30 days post discharge. The intervention is likely to be cost-effective. Limitations: The main trial was conducted during the COVID-19 pandemic which exacerbated staffing challenges and limited opportunities to enhance and support implementation of the intervention. Participant recruitment to the nested study was challenging, resulting in fewer patients than planned and a less diverse sample than that included in the primary cohort. Therefore, while our primary cohort is representative of the patients in the hospital during the trial period, the nested cohort may suffer from some bias. Conclusions: The ‘Your Care Needs You’ intervention offers a way to support staff and patients/families to facilitate greater involvement in care. This research demonstrates that increased involvement in hospital care has the potential to improve safety at transitions. Finding ways to support staff to encourage better patient involvement could lead to even more benefits being realised. Future work: Hospitals could consider involving volunteers in supporting greater patient and family involvement. There was some indication that the component of the intervention most favoured was the patient advice for discharge. Trial registration: This trial is registered as Current Controlled Trials ISRCTN51154948 (WP5) and ISRCTN17062524 (WP6). Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research programme (NIHR award ref: RP-PG-1214-20017) and is published in full in Programme Grants for Applied Research; Vol. 13, No. 4. See the NIHR Funding and Awards website for further award information.

Objective: Autism and eating disorders (ED) frequently co‐occur, particularly in women. Autistic individuals are often undiagnosed when they present to mental health services and many receive their autism diagnosis during or after ED treatment. This study sought to understand the experiences of autistic women with co‐occurring anorexia nervosa (AN) receiving an autism diagnosis. Method: Secondary data analysis was conducted on 17 semi‐structured interviews with autistic women with AN using reflexive thematic analysis. Participants had a diagnosis of autism, had current or past experience of AN, were female‐identifying and aged 18 or above. Results: Participants experienced missed opportunities for autism diagnosis along with misdiagnoses and misunderstandings from healthcare professionals. Participants tended to receive their diagnosis at the point of crisis and experienced being passed between autism and ED services. Receiving a diagnosis helped participants make sense of their experiences and take control of their lives but also brought feelings of shock and distress. Conclusions: While autism diagnosis is often a positive experience for autistic women with AN, a range of emotions can be experienced. The findings highlight a need for better and earlier identification of autism among women with EDs, alongside appropriate post‐diagnosis support and ED treatment that is adapted to autistic individuals' needs.

Introduction ‘Hybrid’ interventions in which some intervention components are fixed across sites and others are flexible (locally created) are thought to allow for adaptation to the local context while maintaining fidelity. However, there is little evidence regarding the challenges and facilitators of implementing hybrid interventions. This paper reports on a process evaluation of a patient safety hybrid intervention called Your Care Needs You (YCNY). YCNY was tested in the Partners at Care Transitions (PACT) randomised controlled trial and aimed to enhance older patients and their families’ involvement in their care in order to achieve safer transitions from hospital to home. Methods The process evaluation took place across eight intervention wards taking part in the PACT trial. 23 interviews and 37 informal conversations were conducted with National Health Service (NHS) staff. Patients (n=19) were interviewed twice, once in hospital and once after discharge. Interviews with staff and patients concerned the delivery and experiences of YCNY. Ethnographic observations (n=81 hours) of relevant activities (eg, multidisciplinary team meetings, handovers, etc) were undertaken. Results The main finding relates to how staff understood and engaged with YCNY, which then had a major influence on its implementation. While staff broadly valued the aims of YCNY, staff from seven out of the eight wards taking part in the process evaluation enacted YCNY in a mostly task-based manner. YCNY implementation often became a hurried activity which concentrated on delivering fixed intervention components rather than a catalyst for culture change around patient involvement. Factors such as understaffing, constraints on staff time and the COVID-19 pandemic contributed towards a ‘taskification’ of intervention delivery, which meant staff often did not have capacity to creatively devise flexible intervention components. However, one ward with a sense of distributed ownership of YCNY had considerable success implementing flexible components. Discussion Hybrid interventions may allow aspects of an intervention to be adapted to the local context. However, the current constrained and pressured environment of the NHS left staff with little ability to creatively engage with devising flexible intervention components, despite recognising the need for and being motivated to deliver the intervention.

Pregnancy may pose a number of physical and healthcare-related challenges for autistic people, who experience differences in sensory processing and can face barriers to accessing healthcare. However, little research has explored autistic pregnancy experiences. Semi-structured interviews were conducted with 24 autistic and 21 non-autistic women during the third trimester of pregnancy. Thematic analysis revealed that the autistic group experienced heightened sensory and physical symptoms during pregnancy compared with the non-autistic group. Autistic participants were sometimes reluctant to disclose their diagnosis to healthcare professionals and felt that professionals lacked autism knowledge. While both groups appreciated clear information about their care, autistic participants further highlighted the need for detailed information and being given time to process verbal information. The autistic group also highlighted the need for sensory adjustments in healthcare settings. The findings indicate ways in which prenatal healthcare can be improved for autistic people, including sensory and communication adjustments. There is a need for greater autism-related training for prenatal healthcare professionals to ensure that autistic people receive appropriate support. Lay Little is known about how autistic people experience pregnancy. We interviewed 24 autistic and 21 non-autistic women during pregnancy to find out about their experiences. Autistic participants had more physical difficulties, such as nausea and pain, during pregnancy than non-autistic participants. They also sometimes felt that healthcare professionals, such as midwives, did not have a good understanding of autism and they did not always feel comfortable telling professionals about their autism diagnosis. Autistic participants told us that they needed professionals to communicate with them clearly and to make changes during appointments such as dimming lights. This research shows that autistic people would benefit from changes to pregnancy appointments and that more training about autism would help maternity care professionals to support autistic people during pregnancy.

Qualitative studies of autistic people’s pregnancy experiences have indicated sensory and communication related barriers to accessing adequate prenatal healthcare. However, quantitative work on the topic is scarce. This online survey study explored pregnancy experiences among 417 autistic and 524 non-autistic people. Compared with non-autistic people, autistic people reported heightened sensory and physical experiences during pregnancy and were more likely to experience prenatal depression and anxiety. Autistic people experienced lower satisfaction with prenatal healthcare, including having lower perceptions of their relationships with healthcare professionals and greater difficulties with antenatal classes. This study identifies key adjustments that can be made to prenatal healthcare, including sensory and communication adjustments. The findings highlight the need for greater autism understanding and awareness among professionals.

Qualitative accounts indicate there are sensory and communication related barriers to adequate childbirth and postnatal healthcare for autistic people. However, little quantitative work has explored the topic. This online survey study explored childbirth and postnatal experiences among 384 autistic and 492 non-autistic people. Compared with non-autistic people, autistic people were more likely to find the sensory aspects of birth overwhelming, and experienced lower satisfaction with birth-related and postnatal healthcare. Autistic people were more likely to experience postnatal depression and anxiety. The findings highlight that sensory and communication adjustments should be made to birth and postnatal healthcare for autistic people. The findings indicate the need for greater autism understanding among professionals and greater postnatal mental health support for autistic people.