Abstract
Background: With the right support, people with learning disabilities can be ‘good enough’ parents (Coren, Thomae, & Hutchfield, 2011; Murphy & Feldman, 2002). Parenting programmes exist to support parents and are made accessible for people with learning disabilities who are expecting a baby, but evaluation of the benefit of these interventions is poor due to a lack of accessible outcome measures (May & Harris, 2020; Wade, Llewellyn, & Matthews, 2008). The Tool to Measure Parenting Self-Efficacy in the antenatal period (TOPSE- ante-natal) measures the impact of parenting interventions on an individual’s self-efficacy during the ante-natal period. This study aimed to modify the TOPSE ante-natal tool through a process of inclusive research, to support a consistent approach to evaluating parenting interventions from the perspective of parents-to-be with learning disabilities.
Methods: A two-phase study using interviews and discussion groups was conducted in a process of inclusive research to modify the TOPSE ante-natal tool. Phase one involved conducting eight cognitive interviews (interviews to understand how individuals process and recall information) with parents with learning disabilities. These were conducted remotely via Microsoft Teams, transcribed verbatim and analysed using content analysis (Krippendorff, 2013). Participants were recruited via snowballing techniques through the advisory groups’ networks. Phase two included three discussion groups with study collaborators and advisors (n=14) to assess the accessibility and acceptability of adaptations of the tool, each making further refinements for consideration.
Findings: Interviews and discussion groups highlighted how parents-to-be with learning disabilities experienced some of the original TOPSE-ante-natal negative statements, including negative points on a Likert scale, difficult to comprehend. Figurative statements and unfamiliar words also caused confusion, and statements focused on pressures of parenting were experienced as confrontational by people with learning disabilities. Statements were removed or replaced and agreed upon in discussion groups to ensure the tool was accessible and meaningful to people with learning disabilities.
Conclusions: We have used a process of inclusive research to modify a self-efficacy tool for parents-to-be with learning disabilities which is freely available on the TOPSE website (https://www.topse.org.uk/site/). Next steps are for this tool to be used and validated in future studies evaluating parenting interventions for people with learning disabilities. This will inform a knowledge base of what interventions should be used by practitioners who are supporting people with learning disabilities to prepare for parenthood.