Katie Greenland

Adolescents with Down syndrome face unique menstrual health challenges, yet their experiences remain under-researched. This study aimed to investigate the menstrual health and wellbeing of adolescents with Down syndrome in the UK, examined primarily through the reflective lens of primary caregivers alongside direct accounts from adolescents, to inform the development of tailored, evidence-based interventions for this population. Guided by an advisory group of caregivers and young people with Down syndrome, this mixed-methods study (September 2024 – September 2025) involved a national online survey of primary caregivers (N = 143) and participatory interviews with adolescents (n = 6), mothers (n = 11) and healthcare and education professionals (n = 8). Quantitative data were analysed descriptively according to support needs (high vs low), and qualitative data were analysed thematically. The median age of menarche (12 years) aligned with the general population. While adolescents generally coped better with menarche than caregivers anticipated, 91% of 120 caregivers of adolescents who had reached menarche had ongoing menstruation concerns. While products like period underwear (“ magic pants” ) improved independence and simplified care, key remaining concerns included: heavy periods (48%); personal care (45%); menstrual pain (45%); and the communication of pain (26%). The impact on adolescent wellbeing was greater for those with higher support needs. Additionally, 33% of caregivers felt “overwhelmed” by menstrual-related care. Decision-making about hormonal intervention was a source of heavy responsibility for caregivers. There is substantial demand for accessible educational and practical resources to support menstruation. Menstrual health is a highly individualised experience for adolescents with Down syndrome. Significant unmet needs persist, particularly for those with higher support needs. Successful outcomes require supporting caregivers through provision of accurate information that dispels pre-menarche anxiety alongside accessible and appropriate guidance to foster young people’s independence, choice and autonomy. Future interventions must be co-developed with the Down syndrome community to ensure safe, dignified menstruation.

Adolescents with Down syndrome face unique menstrual health challenges, yet their experiences remain under-researched. This study aimed to describe the menstruation experiences of adolescents with Down syndrome and their caregivers, in the UK, to inform the development of tailored, evidence-based interventions for this population. Guided by an advisory group of caregivers and young people with Down syndrome, this mixed-methods study (September 2024 –July 2025) involved a national online survey of primary caregivers (N=143) and participatory interviews with adolescents (n=6), mothers (n=11) and healthcare and education professionals (n=8). Quantitative data were analysed descriptively according to support needs (high vs low), and qualitative data were analysed thematically. The median age of menarche (12 years) aligned with the general population. While adolescents generally coped better with menarche than caregivers anticipated, 91% of 120 caregivers of adolescents who had reached menarche had ongoing menstruation concerns. While products like period underwear (“ magic pants” ) improved independence and simplified care, key remaining concerns include: heavy periods (48%); personal care (45%); menstrual pain (45%); and the communication of pain (26%). The impact on adolescent wellbeing was greater for those with greater support needs. Additionally, 33% of caregivers felt “overwhelmed” by menstrual-related care. Decision-making for hormonal intervention was a source of heavy responsibility for caregivers. There is substantial demand for accessible educational and practical resources to support menstruation. Menstrual health is a highly individualised experience for adolescents with Down syndrome. Significant unmet needs persist, particularly for those with higher support needs. Successful outcomes require supporting caregivers through provision of accurate information that dispels pre-menarche anxiety alongside accessible and appropriate guidance to foster young people’s independence, choice and autonomy. Future interventions must be co-developed with the Down syndrome community to ensure safe, dignified menstruation. Funding: Down’s Syndrome Research Foundation UK

Background: Early childhood intervention strategies have the potential to promote health, participation and quality of life for young children at risk of developmental disabilities and their caregivers, however evidence on the impact of integrated care strategies in sub-Saharan Africa is lacking. Access to early intervention is crucial for affected children and families, particularly in resource-constrained settings with limited access to specialised services. This trial aims to evaluate the effectiveness and implementation of a bundle of early identification, care and support, integrated into government health systems in Rwanda: the Pediatric Development Clinic (PDC)/Baby Ubuntu programme. Methods: The study is a single-blind, effectiveness implementation-hybrid (type II) cluster randomised controlled trial with two arms (1:1 ratio). At cluster level, all community health centres in the three trial districts will be eligible for inclusion. At the participant level, at risk children aged ≤ 59 months will be eligible where ‘at risk’ is defined as being a survivor of a newborn condition that is a recognised risk factor for developmental disability (neonatal encephalopathy, prematurity, meningitis, severe jaundice, cerebral malaria, suspected genetic and chromosomal conditions and seizures), and/or not meeting age-specific developmental milestones. Those receiving inpatient hospital treatment or in institutional care will not be eligible. Primary outcomes will be family health-related quality of life (PedsQL) and child participation (Young Child Participation & Environment Measure) assessed 12 months after enrolment and randomisation. Secondary outcomes include caregiver knowledge and confidence (scored structured assessments), psychological distress (Self-Report Questionnaire), experience of disability-affiliated stigma (Affiliate Stigma Scale), and economic activity (time-use survey), in addition to child mortality, illness and hospitalisation, child development/function (Global Scales of Early Development, Malawi Developmental Assessment Tool, PEDI-CAT), and nutritional status (weight-for-age, height-for-age). Analysis will be by intention-to-treat, consisting of all randomised subjects analysed according to assigned study arm. Cluster-level analyses will assess intervention effect. Discussion: The trial utilises best practice methodology and frameworks to conduct rigorous and comprehensive impact, process and economic evaluation of the intervention implemented and is guided by a multi-disciplinary team and steering committee. Trial registration: ISRCTN, ISRCTN17523514. Retrospectively registered 24 July 2024, https://doi.org/10.1186/ISRCTN17523514

Objectives: A three‐arm, open, parallel‐group randomised trial compared three face‐washing methods for cleaning Chlamydia trachomatis from the faces of children with severe active trachoma. The impact of face‐washing on Chlamydia trachomatis on the hands of children and their caregivers and Chlamydia trachomatis duration on faces and hands were investigated as secondary objectives. Methods: Children aged 1–7 years in Oromia, Ethiopia, were screened for active trachoma. We aimed to recruit 470 children with severe conjunctival inflammation; 141 were expected to have concurrent conjunctival infection and facial Chlamydia trachomatis , detected by qPCR. Those with severe inflammation were randomly assigned to water alone, water with soap or damp, microfibre towel protocols. Swabs (children's faces/hands, caregivers' hands) were collected pre‐wash, post‐wash, and at 1, 2, 4, 6 and 8 h. Conjunctival swabs were tested for ocular Chlamydia trachomatis infection; only infected children with facial Chlamydia trachomatis were included in primary analysis, comparing the proportion of faces without Chlamydia trachomatis after each washing method. Results: Of 470 children screened with severe inflammation, 25 (5%) had conjunctival infection and facial Chlamydia trachomatis . All three protocols ( n = 12 water only, n = 8 water and soap, n = 5 damp towel) reduced discharge, but none removed Chlamydia trachomatis from faces immediately post‐wash. No major facial Chlamydia trachomatis load reduction was observed. Face‐washing removed Chlamydia trachomatis from some children's and caregivers' hands, but loads were not significantly reduced where Chlamydia trachomatis persisted. Though Chlamydia trachomatis was transiently absent from one face at 1 h and four at 2 h post‐wash, all baseline Chlamydia trachomatis ‐positive children retained it at 8 h. Conclusions: No evidence of differential or overall effectiveness of the three washing methods at removing facial Chlamydia trachomatis from children with trachoma was found. This finding is limited by a smaller‐than‐anticipated sample size, potentially hindering detection of subtle differences or overall effects. Trial Registration: ISRCTN registry: ISRCTN12814010 (April 2023)

Objectives: A three-arm, open, parallel-group randomised trial compared three face-washing methods for cleaning Chlamydia trachomatis (Ct) from the faces of children with severe active trachoma. The impact of face-washing on Ct on the hands of children and their caregivers, and Ct duration on faces and hands were investigated as secondary objectives. Methods: Children aged 1–7 years in Oromia, Ethiopia, were screened for active trachoma. We aimed to recruit 470 children with severe conjunctival inflammation; 141 were expected to have concurrent conjunctival infection and facial Ct , detected by qPCR. Those with severe inflammation were randomly assigned to water alone, water with soap, or damp, microfibre towel protocols. Swabs (children’s faces/hands, caregivers’ hands), were collected pre-wash, post-wash, and at one, two, four, six and eight hours. Conjunctival swabs were tested for ocular Ct infection; only infected children with facial Ct were included in primary analysis, comparing the proportion of faces without Ct after each washing method. Results: Of 470 children screened with severe inflammation, 25 (5%) had conjunctival infection and facial Ct . All three protocols (n=12 water only, n=8 water and soap, n=5 damp towel) reduced discharge, but none removed Ct from faces immediately post-wash. No major facial Ct load reduction was observed. Face-washing removed Ct from some children’s and caregivers’ hands, but loads were not significantly reduced where Ct persisted. Though Ct was transiently absent from one face at 1 hour and four at 2 hours post-wash, all baseline Ct -positive children retained it at eight hours. Conclusions: No evidence of differential or overall effectiveness of the three washing methods at removing facial Ct from children with trachoma was found. This finding is limited by a smaller-than-anticipated sample size, potentially hindering detection of subtle differences or overall effects. Trial registration: The trial is registered on ISRCTN ( ISRCTN12814010 ).

Face washing for trachoma, like most public health improvements, necessitates behaviour change, yet traditional educational interventions frequently fail to achieve this goal. Behavioural science frameworks offer guidance to develop alternative types of interventions, helping to translate formative research and insights about the target population and behavioural determinants into more effective strategies. This paper outlines the outputs and decision-making underlying the five-stage process we followed to translate formative research findings into intervention activities and materials: (1) synthesising formative research findings into a creative brief to guide intervention development; (2) selecting behaviour change techniques (BCTs) to address key behavioural targets; (3) selecting an overarching intervention concept; (4) developing intervention content; and (5) finalising the intervention’s Theory of Change. This paper presents our experiences and reflections on the intervention design process, using a practical example of a face washing intervention for trachoma control. The intervention was designed for delivery in the Stronger SAFE trial in rural Oromia, Ethiopia (ISCRTN 40760473).

There is currently no single, easy-to-use, reliable indicator to assess whether a face has been washed with soap in the context of trachoma elimination. This study aimed to compare survey report, script-based pictorial recall and facial cleanliness indicators as alternatives to structured observation for measuring face washing behaviour. This method validation study was nested in the Stronger-SAFE trial, Oromia Region, Ethiopia. Structured observation was conducted in randomly selected households for three hours from dawn. The primary caregiver in each household participated in a survey to capture (self)-reported behaviour and/or script-based pictorial recall, a routine-based diary activity to covertly capture information on face washing behaviour of themself and any children aged 1–12. Children 4–12 years old directly participated in the survey and pictorial recall in a subset of households. The facial cleanliness of children aged 1–12 was assessed qualitatively and using the quantitative Personal Hygiene Assessment Tool (qPHAT). Prevalence estimates, sensitivity, specificity and predictive values were computed for each behavioural indicator with observation data as the gold standard. The appropriateness of script-based pictorial recall was assessed using baseline and 3-month follow-up data. Baseline data were collected from 204 households in 68 clusters. Survey estimates of face washing and face washing with soap among caregivers and children were 32% to 60% and 5% to 31% higher than observed behaviour, respectively. Face washing prevalence estimates from pictorial recall were lower than survey estimates and comparable with observations for some face washing with soap indicators (0.3% to 13% higher than observations). Specificity of pictorial recall indicators was high (85% to 99%), but the sensitivity was low (0% to 67%), resulting in a low positive predictive value for all indicators. Both qualitative facial cleanliness indicators and qPHAT scores were poorly correlated with observed face washing earlier that morning. Pictorial recall overestimated face washing with soap among both caregivers and children following intervention delivery but not at baseline. Survey (self)-reported data on face washing is highly inaccurate. Script-based pictorial recall does not correctly classify those who wash their face with soap, and is subject to differential bias following intervention exposure, and facial cleanliness is a poor indicator of recent face washing in settings where faces become rapidly dirty again after washing. Alternatives to structured observation cannot be recommended to monitor the effectiveness of face washing interventions in community settings. Trial Registration ISRCTN registry ISRCTN40760473, https://doi.org/10.1186/ISRCTN40760473.

If facial hygiene practices vary seasonally this could have important implications for the design of interventions for trachoma control. This observational study was conducted to explore seasonal variation in hygiene behaviours in 9 households with at least one child aged 1–9 years-of-age in the West Arsi zone in rural Oromia, Ethiopia. Sixty-one household members were observed intensively over two days in the dry season (January), the rainy season (July) and during the harvest period (October) in 2018. Structured record forms were used to document household water availability and use. Daily water use per capita was very low in all seasons (3.1–4.2 litres). Around one third of water consumed in households in all seasons was associated with body washing. Soap was used during 44 of 677 (6%) of these observed occasions and half of all body washes (n = 340; 50%) included face washing. Overall, 95% of 58 individuals washed their faces at least once between 06:30h and 21:30h in the dry season (21% with soap), compared with 79% in the rainy season (2% with soap) (p = 0.013). Sixty-five percent of householders washed their faces during the harvest observation period (06:30h to 17:30h), none of whom used soap. Twenty-eight percent of 204 children aged 11 and under still had ocular or nasal discharge on their faces after washing. Seventy-three percent of those who washed their faces did so more than once in the dry season, compared with 33% in the rainy season (p<0.001). Face washing occurred throughout the day during the dry season, with a clear peak in the early morning and extra washes in the early evening. Face washing mainly took place in the early morning in the other two seasons. Genuine water scarcity in this area is likely to limit the impact of face washing interventions for trachoma control in the absence of water supply interventions. However, face washing was most common at the time of year when water is the hardest to come by, and seasonal differences in behaviour should be considered in any resulting intervention design.