This paper reports on in-depth qualitative interviews conducted with 69 disabled people in England and Scotland, and with 28 key informants from infrastructure organisations in the voluntary and statutory sectors, about the impact of COVID-19, and measures taken to control it. Participants were recruited through voluntary organisations. As with everyone, the Pandemic has had a huge impact: we discuss the dislocations it has caused in everyday life; the failures of social care; the use of new technologies; and participants' view on leadership and communication.We conclude with suggestions for urgent short term and medium term responses, so that the United Kingdom and other countries can respond better to this and other pandemics, and build a more inclusive world.
Background: The Zika epidemic highlighted gaps in health and social care services for parents of children with developmental disabilities. 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. Methods: Two facilitators delivered ‘Juntos’ to four groups of 8-10 caregivers. One researcher observed each group. Data were collected from: observation notes from 40 sessions, focus group discussions held after each session, pre- post intervention questionnaires with 34 caregivers, and semi-structured interviews conducted with four facilitators, 12 caregivers and three stakeholders. We used the Bowen framework in data analysis. Results: 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. Conclusion: Acceptability, demand and practicality of ‘Juntos’ is high. Yet implementation is challenged by existing health systems gaps in support of children with CZS.
Background: This study explores the acceptability and feasibility of the use of two different Participatory Visual Methods (Participatory Video and Digital Storytelling) in gathering information on the experiences and perspectives of carers of children with Congenital Zika Syndrome within Colombia. Methods: Participatory Video was used to assess the impact of the Juntos parent-support intervention in the lives of carers, and Digital Storytelling was used to explore the healthcare access for these children. In-depth interviews were conducted to probe participants on their views of these methods. Results: One Participatory Video was produced and four Digital Stories. Of the initial eight caregivers who took part in the Participatory Video process, four completed both the Digital Storytelling process and an in-depth interview about their experiences. The main factors shaping participants’ experiences related to the skills learned in making the videos, the feeling of collectiveness and the control over the processes. Conclusion: Women with children with Congenital Zika Syndrome have reported feeling marginalised and misunderstood in daily life. This case study found that Participatory Visual Methods is acceptable and feasible. Moreover, these approaches can support groups in different aspects, such as providing a space to share their stories creatively, hear others in similar situations as them and increase the feeling of community.
Background: This study explores the acceptability and feasibility of the use of two different Participatory Visual Methods (Participatory Video and Digital Storytelling) in gathering information on the experiences and perspectives of carers of children with Congenital Zika Syndrome within Colombia. Methods: Participatory Video was used to assess the impact of the Juntos parent-support intervention in the lives of carers, and Digital Storytelling was used to explore the healthcare access for these children. In-depth interviews were conducted to probe participants on their views of these methods. Results: One Participatory Video was produced and four Digital Stories. Of the initial eight caregivers who took part in the Participatory Video process, four completed both the Digital Storytelling process and an in-depth interview about their experiences. The main factors shaping participants’ experiences related to the skills learned in making the videos, the feeling of collectiveness and the control over the processes. Conclusion: Women with children with Congenital Zika Syndrome have reported feeling marginalised and misunderstood in daily life. This case study found that Participatory Visual Methods is acceptable and feasible. Moreover, these approaches can support groups in different aspects, such as providing a space to share their stories creatively, hear others in similar situations as them and increase the feeling of community.
Background: The 2015 – 2016 Zika epidemic highlighted gaps in health and social care services for parents of children with developmental disabilities. In response, we developed the ‘Juntos’ intervention, a 10 week community-based early intervention support group for parents of children with congenital Zika syndrome (CZS). The intervention's components include participatory learning sessions, practical skill acquisition, peer support, and psychological support, aiming to improve caregiver’s knowledge and confidence in caring for their children. This study aimed to evaluate the feasibility of implementing ‘Juntos’ in Colombia. Methods: Two facilitators delivered ‘Juntos’ to four groups of 8-10 caregivers between 2017 and 2018. One researcher observed each group. Data were collected from: observation notes from 40 sessions, focus group discussions held after each session, pre- post intervention questionnaires with 34 caregivers, and semi-structured interviews conducted with four facilitators, 12 caregivers and three stakeholders. We used the Bowen framework in data analysis. Results: The feasibility evaluation revealed that 'Juntos' was highly acceptable and in demand among the target population. The intervention was predominantly delivered with fidelity. Practicality was facilitated by providing transport costs and selecting convenient locations. Additional organisational and social media support was required for successful implementation. Community health worker training may support integration and the established groups could facilitate programme expansion. However, participants perceived lack of prioritisation as a limitation within existing health systems. Participants’ knowledge and confidence to care for their child improved after programme enrolment. Conclusion: The 'Juntos' intervention demonstrated high acceptability, demand, and practicality in supporting parents of children with CZS in Colombia. However, its implementation faces challenges due to existing gaps in health system support for children with CZS.
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