Session 17 - Parents Experiences and Involvement in Research
Parental experiences of nasogastric (NG) tube feeding for young children with Down syndrome.
Authors: Laura Hielscher, Karen Irvine, Samantha Rogers, Amanda Ludlow & Silvana Mengoni
University of Hertfordshire
Correspondence email address – s.mengoni@herts.ac.uk
Background: There is some preliminary evidence to suggest a relatively high prevalence of nasogastric (NG) feeding tubes for infants with Down syndrome, with a lack of structured support and exit-planning.
Research question: We aimed to explore how NG feeding tubes are being used in the UK for young children with Down syndrome, including decision-making processes, exit-planning, and the impact on development.
Method: Fourteen mothers of children with Down syndrome aged 0-5 years took part in virtual semi-structured interviews. Interviews focused on how NG feeding tubes are being used for young children with Down syndrome, including exploring decision-making processes, exit-planning, and the impact on oral feeding, eating, and drinking.
Results: Reflexive thematic analysis resulted in three core themes. Mothers had clear feeding goals which were often required to be put aside during periods of acute illness. Where mothers were not able to meet their breastfeeding goals, they experienced feelings of grief. Once NG tubes were in place, mothers struggled with a lack of support and exit-planning, meaning that their child was dependent on the NG tube far longer than initially anticipated, with mothers reporting significant psychosocial and emotional challenges.
Conclusion: The results of this study highlight several unmet support needs for parents of children with Down syndrome that are fed via NG tube. Structured NG tube exit planning is essential in reducing parental anxieties and preventing feeding tube dependency. Specialist support for breastfeeding infants fed via NG tube was also highlighted as crucial.
Parental Perspectives on the Educational Journeys of their Children with Down Syndrome: Starting Points for Cultural Change
Merelina Houghton, Bishop Grosseteste University, Lincoln, merelinaj@btinternet.com
This paper presents research conducted for the Doctorate in Education (thesis submitted August 2024). Recent UK research into parental perspectives of the education of their children with Down syndrome indicates some inconsistencies. Whilst, surveys provide an overview of educational provision and parental satisfaction, qualitative data offering parental perspectives of their child’s educational journey is limited. A framework for understanding the educational experiences of this population was devised using previous research and theories of funds of knowledge and local understanding. Situated within an interpretive paradigm, the research design assumes that knowledge can be gained from experience and asks the questions: ‘What do the educational journeys of learners with Down syndrome have to teach us as education professionals?’ ‘What insights do parental perspectives offer into factors contributing to a positive experience of education for young people with Down syndrome?’ The narrative methodology was informed by elements of life history. Unstructured interviews were conducted online with ten parents of children with Down syndrome, mainly between April and June 2021. Transcripts were analysed using reflexive thematic analysis. The parental narratives yielded a wealth of data regarding systemic issues. Participants’ proactivity was critical in achieving positive educational experiences for their children. Rich insights into underlying attitudes, values and beliefs indicated where cultural change was needed. A fundamental implication of these findings is that to create the best possible educational experiences for children with Down syndrome we need to foster attitudes based on presumptions of belonging, competence and a professional willingness to learn. In conclusion, I propose application of a funds of knowledge theory to the way in which local authorities and educational establishments relate to families of children with Down syndrome.
Co-production in research: Guidance on research with family carers of people with a learning disability
Two new guides on co-production in research have been launched by the University of Warwick, University of Kent and the Challenging Behaviour Foundation. One for researchers and one for family carers. Both focusing on co-producing research with family carers of people with a learning disability although much of the guidance applies to a broader range of co-production scenarios.
The guides, which have been co-produced with family carers, bring together insights and experience to equip researchers and family carers with knowledge of best practice. All those involved in the project had previously worked on co-production research project involving the design and delivery of support programmes. The Group wished to share their learning and raise awareness of the importance of co-production in research.
The toolkit for researchers describes the reasonable adjustments that family carers need, ensuring family carers are valued and able to contribute in a meaningful way. It explains why co production is worth the time and investment.
The guidance for family carers aims to support family carers who might be asked to take part in research, to empower them with the knowledge of what good co-production looks like, and hopefully, the confidence to ask for it.
Both documents are based on seven golden rules which will be discussed in more detail in the presentation:
- Work together as peers.
- Make it meaningful.
- Listen and keep an open mind.
- Communicate clearly.
- Pay appropriately.
- Be sensitive.
- Be flexible
The free guide is available for everyone to access at Co-producing research (warwick.ac.uk).
Authors and affiliations:
- Jo Griffin, family carer and Assistant Professor, Centre for Research in Intellectual and Developmental Disabilities, University of Warwick
- Daniel Sutherland, University of Warwick
- Debbie Austin, family carer, lived experience expert on Early-Positive Approaches to Support (E-PAtS) and Positive Family Connections
- Gretchen Bjornstad, SPaCE Project, University of Exeter
- Jill Bradshaw, Professor of Communication in Intellectual and Developmental Disabilities, Early-Positive Approaches to Support (E-PAtS)
- Michael Charles, family carer, lived experience expert and professional facilitator on EPAtS.
- Viv Cooper, family carer, CEO of Challenging Behaviour Foundation
- Judith Divers, family carer, lived experience expert on E-PAtS
- Kate Evans-Jones, family carer, lived experience expert on Healthy Parent Carers, University of Exeter Medical School.
- Sharon Foxwell, family carer, lived experience expert on Healthy Parent Carers & SPaCE project, University of Exeter Medical School.
- Nick Gore, Reader in Intellectual and Developmental Disabilities and Lead for Early-Positive Approaches to Support (E-PAtS), Tizard Centre, University of Kent
- Richard Hastings, University of Warwick.
- Saira Minhas, family carer, lived experience expert on Healthy Parent Carers & SPaCE project, University of Exeter Medical School.
- Ian Penfold, family carer, lived experience expert and Local Champion for the Challenging Behaviour Foundation
- Gurdeep Singh, family carer, lived experience expert on Healthy Parent Carers & SPaCE project, University of Exeter Medical School.
- Bel McDonald, Family Involvement Coordinator, Healthy Parent Carers, member of the PenCRU Family Faculty, University of Exeter Medical School.
Email address for correspondence: j.k.e.griffin@bham.ac.uk, Jo Griffin, University of Birmingham
