Publications
Review our reports, journal articles, conference poster presentations and other materials that have been generated by our research.
Participatory Visual Methods with caregivers of children with Congenital Zika Syndrome in Colombia: A case study
Unleashing the Power of Stories: Innovative Participatory Visual Methods Illuminate the Lives of Caregivers of Children with Congenital Zika Syndrome in Colombia.
For women caring for children with Congenital Zika Syndrome, the challenges they face can be isolating and overwhelming. In this study we describe how we harnessed the power of Participatory Video and Digital Storytelling to shed light on their experiences and perspectives. Through these innovative methods, caregivers were able to share their stories, learn new skills, and connect with a community of peers. Our findings show that Participatory Visual Methods are not only acceptable and feasible, but they can also empower and uplift caregivers, providing a much-needed voice to those who have felt marginalized. Join us as we delve into the power of stories and the impact of these creative approaches in illuminating the lives of caregivers in Colombia
Livelihood Support for Caregivers of Children with developmental Disabilities: Findings from a Scoping Review and Stakeholder Survey
Poverty and disability often go hand in hand, impacting the lives of vulnerable and marginalised families. But what existing approaches are being used to support caregivers of children with developmental disabilities in these communities? Our study utilising the World Health Organization’s community-based rehabilitation matrix has revealed a mosaic of strategies, from skills development to self-employment, but also exposed a gap in published literature. Join us as we delve into the findings and explore the implications for rehabilitation, shining a light on the path to a brighter future for these families.
Randomised controlled pilot feasibility trial of an early intervention programme for young infants with neurodevelopmental impairment in Uganda: a study protocol
Early intervention programmes (EIPs) for infants with neurodevelopmental impairment have been poorly studied especially in low-income settings. We aim to evaluate the feasibility and acceptability of a group participatory EIP, the ‘ABAaNA EIP’, for young children with neurodevelopmental impairment in Uganda. We have developed a study protocol for this project, and details can be downloaded below:
Early Detection and Intervention for Young Children With Early Developmental Disabilities in Western Uganda: a Mixed-methods Evaluation
A programme of early detection and intervention for children with early developmental disabilities and their families was feasible and acceptable in a rural community-based Ugandan setting. Health care worker training positively impacted knowledge, confidence, attitudes, and referral rates. Families enrolled to the early intervention programme reported significant improvements in quality of life. Important programmatic barriers identified included geographical spread, poverty, gender inequality, and stigma.
Illuminating the empowerment journey of caregivers of children with disabilities: Understanding lessons learnt from Ghana
Empowerment is an increasingly popular goal, considered core to a transformative agenda for children with disabilities and their families. However, it can still be a poorly understood concept in practice. This article is an empirical analysis of the ‘empowerment journeys’ of caregivers participating in a community-based training programme in Ghana.
Our findings illuminate the complexity and non-linearity of the caregiver empowerment journey. There were important gains in individual dimensions of power and the nascent emergence of collective power, through improved knowledge and valuable peer support from group membership. However, further gains were impeded by their limited influence over wider economic and sociopolitical structural issues that perpetuated their experiences of poverty, stigma and the gendered nature of caregiving. The support group facilitator often played a valuable brokering role to help traverse individual agency and structural issues.
Parent support groups for families and children with congenital zika syndrome in Colombia
We aimed to evaluate the feasibility of a 10-week support group, ‘Juntos’, as a community-based intervention for parents of children with congenital Zika syndrome (CZS) in Colombia.
We found that acceptability and demand for the intervention were high. ‘Juntos’ was largely delivered with fidelity. Practicality was facilitated by providing transport costs and selecting convenient locations. Adaption requirements included additional organisational and social media support. Community health worker training may support integration and the established groups could facilitate programme expansion; however, participants perceived lack of prioritisation as a limitation. Participants’ knowledge and confidence to care for their child improved after programme enrolment.
A Support Program for Families Impacted by Congenital Zika Syndrome
A community-based family group program for caregivers of children with congenital Zika syndrome (CZS) was developed based on an existing program for families of children with cerebral palsy and pilot tested in Brazil. Program managers developing group initiatives should consider fast-track learning approaches to adjust their intervention to make it more useful to participants, and we describe this process in our paper.
Caregivers of children with CZS will likely benefit from the ability to engage and exchange with caregivers of children with other neurodevelopmental disabilities. We found that integrating emotional support activities into groups that address child development is important, and adds value.
Mothers as facilitators for a parent group intervention
Families play an important role in their care of children with developmental disabilities, yet their knowledge, experience and skills are rarely harnessed in existing interventions to best support these families.
This study explores the use of mothers as facilitators for a community-based group intervention for children with CZS and their caregivers in Brazil.
The use of expert mothers as facilitators of caregiver groups provides a unique approach to harness the knowledge, experience, and skills of families to provide care, and is likely to be feasible.
Early intervention for children with developmental disabilities
In the last two decades, the global community has made significant progress in saving the lives of children <5 y of age. However, these advances are failing to help all children to thrive, especially children with disabilities. Most early child development research has focussed on the impact of biological and psychosocial factors on the developing brain and the effect of early intervention on child development. Yet studies typically exclude children with disabilities, so relatively little is known about which interventions are effective for this high-risk group. In this article we provide an overview of child development and developmental disabilities. We describe family-centred care interventions that aim to provide optimal stimulation for development in a safe, stable and nurturing environment. We make the case for improving opportunities for children with developmental disabilities to achieve their full potential and thrive, including through inclusive early childhood development intervention. Finally, we call for the global research community to adopt a systematic approach for better evidence for and implementation of early interventions for children with developmental disabilities in low-resource settings.
Systematic review of interventions for reducing stigma experienced by children with disabilities and their families
We aimed to identify and assess the evidence for interventions to reduce stigma experienced by children with disabilities and their families in low- and middle-income settings.
The majority (65%) of interventions targeted enacted stigma (negative attitudes) and the most common intervention approach was education/training (63%). Over half (54%) of interventions were delivered at the organisational /institutional level, and only four studies targeted more than one social level. The most common disability targeted was epilepsy (50%) followed by intellectual impairment (20%). The majority of studies (n = 18/20, 90%) found a reduction in a component of stigma; however, most (90%) studies had a high risk of bias.
Participatory Visual Methods with caregivers of children with Congenital Zika Syndrome in Colombia: A case study
Unleashing the Power of Stories: Innovative Participatory Visual Methods Illuminate the Lives of Caregivers of Children with Congenital Zika Syndrome in Colombia.
For women caring for children with Congenital Zika Syndrome, the challenges they face can be isolating and overwhelming. In this study we describe how we harnessed the power of Participatory Video and Digital Storytelling to shed light on their experiences and perspectives. Through these innovative methods, caregivers were able to share their stories, learn new skills, and connect with a community of peers. Our findings show that Participatory Visual Methods are not only acceptable and feasible, but they can also empower and uplift caregivers, providing a much-needed voice to those who have felt marginalized. Join us as we delve into the power of stories and the impact of these creative approaches in illuminating the lives of caregivers in Colombia
Livelihood Support for Caregivers of Children with developmental Disabilities: Findings from a Scoping Review and Stakeholder Survey
Poverty and disability often go hand in hand, impacting the lives of vulnerable and marginalised families. But what existing approaches are being used to support caregivers of children with developmental disabilities in these communities? Our study utilising the World Health Organization’s community-based rehabilitation matrix has revealed a mosaic of strategies, from skills development to self-employment, but also exposed a gap in published literature. Join us as we delve into the findings and explore the implications for rehabilitation, shining a light on the path to a brighter future for these families.
Randomised controlled pilot feasibility trial of an early intervention programme for young infants with neurodevelopmental impairment in Uganda: a study protocol
Early intervention programmes (EIPs) for infants with neurodevelopmental impairment have been poorly studied especially in low-income settings. We aim to evaluate the feasibility and acceptability of a group participatory EIP, the ‘ABAaNA EIP’, for young children with neurodevelopmental impairment in Uganda. We have developed a study protocol for this project, and details can be downloaded below:
Early Detection and Intervention for Young Children With Early Developmental Disabilities in Western Uganda: a Mixed-methods Evaluation
A programme of early detection and intervention for children with early developmental disabilities and their families was feasible and acceptable in a rural community-based Ugandan setting. Health care worker training positively impacted knowledge, confidence, attitudes, and referral rates. Families enrolled to the early intervention programme reported significant improvements in quality of life. Important programmatic barriers identified included geographical spread, poverty, gender inequality, and stigma.
Illuminating the empowerment journey of caregivers of children with disabilities: Understanding lessons learnt from Ghana
Empowerment is an increasingly popular goal, considered core to a transformative agenda for children with disabilities and their families. However, it can still be a poorly understood concept in practice. This article is an empirical analysis of the ‘empowerment journeys’ of caregivers participating in a community-based training programme in Ghana.
Our findings illuminate the complexity and non-linearity of the caregiver empowerment journey. There were important gains in individual dimensions of power and the nascent emergence of collective power, through improved knowledge and valuable peer support from group membership. However, further gains were impeded by their limited influence over wider economic and sociopolitical structural issues that perpetuated their experiences of poverty, stigma and the gendered nature of caregiving. The support group facilitator often played a valuable brokering role to help traverse individual agency and structural issues.
Parent support groups for families and children with congenital zika syndrome in Colombia
We aimed to evaluate the feasibility of a 10-week support group, ‘Juntos’, as a community-based intervention for parents of children with congenital Zika syndrome (CZS) in Colombia.
We found that acceptability and demand for the intervention were high. ‘Juntos’ was largely delivered with fidelity. Practicality was facilitated by providing transport costs and selecting convenient locations. Adaption requirements included additional organisational and social media support. Community health worker training may support integration and the established groups could facilitate programme expansion; however, participants perceived lack of prioritisation as a limitation. Participants’ knowledge and confidence to care for their child improved after programme enrolment.
A Support Program for Families Impacted by Congenital Zika Syndrome
A community-based family group program for caregivers of children with congenital Zika syndrome (CZS) was developed based on an existing program for families of children with cerebral palsy and pilot tested in Brazil. Program managers developing group initiatives should consider fast-track learning approaches to adjust their intervention to make it more useful to participants, and we describe this process in our paper.
Caregivers of children with CZS will likely benefit from the ability to engage and exchange with caregivers of children with other neurodevelopmental disabilities. We found that integrating emotional support activities into groups that address child development is important, and adds value.
Mothers as facilitators for a parent group intervention
Families play an important role in their care of children with developmental disabilities, yet their knowledge, experience and skills are rarely harnessed in existing interventions to best support these families.
This study explores the use of mothers as facilitators for a community-based group intervention for children with CZS and their caregivers in Brazil.
The use of expert mothers as facilitators of caregiver groups provides a unique approach to harness the knowledge, experience, and skills of families to provide care, and is likely to be feasible.
Early intervention for children with developmental disabilities
In the last two decades, the global community has made significant progress in saving the lives of children <5 y of age. However, these advances are failing to help all children to thrive, especially children with disabilities. Most early child development research has focussed on the impact of biological and psychosocial factors on the developing brain and the effect of early intervention on child development. Yet studies typically exclude children with disabilities, so relatively little is known about which interventions are effective for this high-risk group. In this article we provide an overview of child development and developmental disabilities. We describe family-centred care interventions that aim to provide optimal stimulation for development in a safe, stable and nurturing environment. We make the case for improving opportunities for children with developmental disabilities to achieve their full potential and thrive, including through inclusive early childhood development intervention. Finally, we call for the global research community to adopt a systematic approach for better evidence for and implementation of early interventions for children with developmental disabilities in low-resource settings.
Systematic review of interventions for reducing stigma experienced by children with disabilities and their families
We aimed to identify and assess the evidence for interventions to reduce stigma experienced by children with disabilities and their families in low- and middle-income settings.
The majority (65%) of interventions targeted enacted stigma (negative attitudes) and the most common intervention approach was education/training (63%). Over half (54%) of interventions were delivered at the organisational /institutional level, and only four studies targeted more than one social level. The most common disability targeted was epilepsy (50%) followed by intellectual impairment (20%). The majority of studies (n = 18/20, 90%) found a reduction in a component of stigma; however, most (90%) studies had a high risk of bias.