Sarah Polack

Background: Globally, at least 2.6 billion people need rehabilitation services and more than 2.5 billion people need assistive technology (AT). However, reliable data are lacking on population level need for rehabilitation services and assistive products (AP) in different settings for evidence-based policy and programme planning. This first study paper describes the development of the Functional Needs Assessment Tool (FNAT), a new survey tool developed to fill this data gap between 2018 and 2023. Objective: To develop a new multidomain tool to assess population-level functional difficulties and need for service and AP utilising both self-report and clinical assessment methodologies. Development stages: FNAT was developed based upon primary and secondary data analysis, existing survey tools and expert consultation through a series of four steps: Step 1 Inform, Step 2 Build, Step 3 Draft and Step 4 Develop. FNAT uses both self-reported and clinical assessment tools to estimate the prevalence of functional difficulties/impairment and the need for services and AP in the following seven domains: vision, hearing, mobility, communication, cognition, self-care and mental health. It uses a two-stage population-based assessment with data collection through a bespoke tablet-based mobile application and web-based platform. Discussion: FNAT is a new multi-domain modular tool developed to address data gaps by estimating prevalence of functional difficulties and service/AP needs in a population. Potential advantages and disadvantages were highlighted during the development stages, and the tool needs to be pilot tested to assess the feasibility of the methodology and the functionality of the tablet-based mobile data collection application.

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

People with disabilities face more barriers accessing healthcare and on average experience worse health outcomes. Strengthening health access for people with disabilities requires coordinated action across the health system. The Missing Billion Inclusive Health System Framework is a new tool to support policy makers to assess levels of disability inclusion within health systems. This study uses the Missing Billion framework in Brazil to i) contribute to the further testing and development of the framework and ii) assess the level of disability inclusion within the Unified Health System. Information sources used to complete the assessment included Brazilian laws and policies, publicly available data, published literature, literature reviews and interviews with people with disabilities and service providers in São Paulo, Santos, Brasília and Arcoverde. A workshop with stakeholders was held to co-develop key recommendations. Overall, the Missing Billion framework was comprehensive and feasible to complete. It highlighted key strengths in terms of disability inclusion in the Brazilian health system as well as gaps and leverage points for action. The Missing Billion framework can identify progress and opportunities to strengthen disability inclusion in health systems. In Brazil, key promotive factors include supportive policies, leadership and financing structures. There are also opportunities for strengthening data and evidence, healthcare worker training on disability and health service accessibility. Actions must be centered on and informed by people with disabilities.

Evidence-based and theory-informed interventions focusing on parents of children with disabilities in low-income countries are scarce. This study examined the feasibility of Tiyanjane, a 12-week pilot intervention developed to promote parental involvement in the education of children with disabilities in Malawi. A mixed-method approach was employed based on five aspects of Bowen’s feasibility framework: acceptability, demand, implementation, practicality, and limited efficacy. Twenty-one participants (13 caregivers, four teachers, and four local leaders) participated in the study. Standardised measures, namely the Parent and Family Adjustment Scale (PAFAS) and the Multidimensional Scale of Perceived Social Support (MSPSS), were employed to evaluate changes in parental practices, adjustments, and perceived social support. Qualitative data were collected using focus groups and in-depth interviews to assess the feasibility of the intervention. Tiyanjane showed promise in promoting parental involvement in the education of children with disabilities. The intervention demonstrated high fidelity, achieving 100% retention and 95% attendance. Local resources, commitment from participants and facilitators, and strong family school–community ties enabled the practicality and execution of the intervention. Significant improvements were observed in the PAFAS and MSPSS scores across the assessed post-intervention outcomes. Minor logistical issues including resource and implementation challenges were reported. Tiyanjane was feasible for the facilitators and participants in the Malawian context. Further studies are needed to assess the programme’s adaptation, integration, and expansion in other contexts before scaling up.

To monitor progress in including persons with disabilities, including in interventions which can improve their health and quality of life, it is crucial to collect data on their participation. However, there are many different ways of defining disability and thus categorising individuals as disabled/not disabled, which may impact measures of participation. This study aims to assess the relationship between three different measures of disability and the level of participation of persons with disabilities. We analysed data from a population-based survey of disability amongst Syrian refugees in Istanbul, which collected data on disability using the Washington Group enhanced set of disability questions as well a two-question set asking about perceived activity limitations due to disability. The prevalence of disability ranged from 13.5 to 22.4% depending on the measure used. The group of people that are categorised as disabled also differs, indicating who is being seen as disabled changes when a different measure is used. Levels of participation, with regards to paid work, education and being partnered, also varied by measure, for example, being in paid work ranged from 26% to 38%. These findings underscore the importance of carefully selecting and clearly defining disability measures in studies, (health) interventions and policy contexts.

Evidence-based and theory-informed interventions focusing on parents of children with disabilities in low-income countries are scarce. This study examined the feasibility of Tiyanjane, a 12-week pilot intervention developed to promote parental involvement in the education of children with disabilities in Malawi. A mixed-method approach was employed based on five aspects of Bowen's feasibility framework: acceptability, demand, implementation, practicality, and limited efficacy. Twenty-one participants (13 caregivers, four teachers, and four local leaders) participated in the study. Standardised measures, namely the Parent and Family Adjustment Scale (PAFAS) and the Multidimensional Scale of Perceived Social Support (MSPSS), were employed to evaluate changes in parental practices, adjustments, and perceived social support. Qualitative data were collected through focus groups and in-depth interviews, to assess the feasibility of the intervention. Tiyanjane showed promise in promoting parental involvement in the education of children with disabilities. The intervention demonstrated high fidelity, achieving 100% retention, and 95% attendance. Local resources, commitment from participants and facilitators, and strong family school-community ties enabled the practicality and execution of the intervention. Significant improvements were observed in the PAFAS and MSPSS scores across the assessed post-intervention outcomes. Minor logistical issues including resource and implementation challenges were reported. Tiyanjane was feasible for the facilitators and participants in the Malawian context. Further studies are needed to assess the programme’s adaptation, integration, and expansion in other contexts before scaling up.

This paper describes the co-design of a participatory group intervention developed to promote and enhance parental involvement in supporting the education of children with disabilities in Malawi. The intervention was developed through participatory co-design workshops and consensus meetings involving 23 stakeholders, including parents, teachers, and community leaders. The Behaviour Change Wheel framework and the Delphi technique guided the intervention development process, ensuring theoretical robustness and contextual relevance. The proposed intervention, Tiyanjane (‘Let Us Unite’), includes facilitator and participant training and practical face-to-face sessions over 12 weeks. The intervention targets four key areas: developing family action plans, holding regular meetings, providing ongoing support at home and school, and facilitating training and information exchange. This participatory approach, involving a wide range of local stakeholders, offers valuable insights into the process and outcomes of co-developing culturally relevant and theoretically grounded interventions to address the needs of families with children with disabilities in low-resource settings. Future research should include an evaluation of the feasibility and acceptability of the intervention and examine its applicability in diverse sociocultural settings within LMICs (low- and middle-income countries).

Objectives: Approximately one third of people with dementia live on their own and they face an increased risk of unmet needs and loneliness. This systematic review aimed to identify and describe non‐pharmacological interventions that have been evaluated for people with dementia living alone and to examine the effectiveness of these interventions.Methods: Following PRISMA guidelines, six databases were systematically searched: MEDLINE, Embase, CINAHL, PsycINFO, Social Care online, and ClinicalTrials.gov. Studies that reported on the impact or experience of an intervention for people with dementia living alone in the community (not long‐term care) and that had been published since 2000 were included in the review. No restrictions were applied in terms of study design or outcome measures. Study risk of bias was assessed, and a narrative approach was used to synthesize findings.Results: Thirteen studies of 13 different interventions were included, grouped into five intervention categories: home‐based dementia case/care management (n = 4), technology (n = 3), social (n = 3), cognitive (n = 2) and psychological (n = 1). There was one randomized controlled trial (RCT), and two economic evaluations that used data from RCTs. Most other studies were small‐scale, and only two were evaluated to have low risk of bias. Most studies reported positive or mixed findings in terms of the intervention's impact on the person with dementia or aspects of feasibility. However, studies were heterogeneous in terms of intervention, study design, and outcomes.Conclusions: This review of a limited body of research highlights the potential for interventions to support people with dementia who live alone. It also identifies key evidence gaps and the need for more robust and comparable research to better understand what works, why, for who, and how. Involving people with dementia who live alone in the design, implementation, and evaluation of these interventions will be crucial to ensure that their needs and preferences are met.

This study aimed to explore the factors that influence parental involvement in supporting the education of children with disabilities in Malawi, thereby generating insights into the barriers and facilitators they face. We conducted focus groups and in-depth interviews with 25 participants from Nkhata Bay District: teachers, parents, and children with disabilities. We used the COM-B model to analyse how parents’ capabilities, opportunities, and behaviours influence their involvement in their children’s education. This study revealed that parents of children with disabilities showed willingness, optimism regarding their children’s future, and a strong sense of responsibility for their education. However, factors such as the limited knowledge of children’s learning needs, time, low confidence, and financial challenges have constrained their involvement. Schools and communities frequently limit participation opportunities by not consistently practising or championing parental involvement in policies and actions. This study sheds light on the complex interplay between knowledge, practical constraints, and external support systems that shape parental involvement in the education of children with disabilities. Further research aimed at creating tailored and context-relevant interventions to improve parental involvement in the education of children with disabilities in low-income settings is required.

This paper describes the co-design of a participatory group intervention aimed at promoting and strengthening parental involvement in supporting the education of children with disabilities in Malawi. The intervention was developed through participatory co-design workshops and consensus meetings involving 23 stakeholders, including parents, teachers and community leaders. The Behaviour Change Wheel framework and the Delphi technique were used to guide the intervention development process to ensure theoretical robustness and contextual relevance. The proposed intervention, Tiyanjane (‘Let Us Unite’), includes facilitators’ and participants’ training and practical face-to-face sessions over ten weeks. The intervention will target four key areas: developing family action plans, holding regular meetings, providing ongoing support at home and school, and facilitating training and information exchange. This participatory approach with a wide range of local stakeholders offers valuable insights into the process of co-developing culturally relevant and theoretically grounded interventions that address the needs of families with children with disabilities in a low-resource setting. Future research should include an evaluation of the intervention’s feasibility and acceptability and examining its applicability in diverse socio-cultural settings within LMICs (low and middle-income countries).