Investigating the Impact of Co-Produced Parent Training Programmes for Autistic and Neurodevelopmentally Diverse Children and Young People
Background:
Education and training programmes for children and young people who are Autistic or neurodevelopmentally diverse, and their parents and carers, are an important component of services delivered to help families overcome the struggles that their children can experience. However, there is limited knowledge about what the characteristics and active ingredients are that are needed in these programmes to make them effective.
Intervention:
The Family and Autism Learning Programmes are six-session structured programmes, designed by ADDvanced Solutions Community network CIC, to give parents and carers the skills, knowledge and confidence to enable them better to recognise, understand and meet the needs of their family living with neurodevelopmental conditions, specific learning difficulties and associated mental health conditions. The coaching programme provides individualised intervention for secondary school aged young people (11-18), providing the opportunity for a young person to: identify and work on personal goals; develop their understanding of autism and their diagnosis; and identify coping strategies for everyday challenges.
Methods:
A mixed-methods realist evaluation approach was used. Realist evaluation methods work to identify outcomes, to understand the active ingredients that help achieve the outcomes, and to understand the impact of them over time.
The study is comprised of four workstreams, undertaken in parallel:
- Collation and analysis of eighteen months of evaluation and course feedback data, already collected by ADDvanced solutions, as part of their routine Family Learning Programme implementation
- Prospective evaluation of the outcomes and impact of participating in the learning programmes, using repeated outcome measures (pre, post, 3 and 6 month follow-up) and an online survey to follow the participants of 24 Learning programmes, over an 18-month period.
- In-depth interviews with participants, 6-12months after completing the learning programme
- Interviews with children and young people to learn about the experience and impact of the coaching programme. Findings were used to develop a logic model to understand the active ingredients of the coaching programme and the way in which these produced beneficial outcomes and impacts.
Outcomes and Impacts:
Participants showed increase in knowledge and understanding after completing the APDLP in all domains tested, outcomes measures demonstrated a reduction in Parental Stress and an increase in parental self-efficacy after completing the learning programme. These changes were maintained at 3 and 6 months after the programme, in those participants that we sampled.
Respondents told us that participating in the learning programme had:
• Improved and expanded their understanding how their child sees and processes the world around them
• Helped them learn, and try out new useful strategies to support their child
• Improved their confidence to talk to professionals about their child’s needs
• Helped them advocate for their child’s needs and rights more effectively
• Increased their understanding of local services for their child and family
• Helped them access additional education support for their child
• Provided opportunity to be with other families and share knowledge and experiences.
• Helped participants feel less alone, generate new ways to approach challenges
Children who took part in the coaching element experienced improvements in how they understood themselves, their feelings, and how their diagnosis affected them. They were able to use this new knowledge to improve the way they communicated their needs and their experiences with others, which reduced conflict, increased efforts to help from others and improved a range of educational, social and family challenges for the young people who took part.
Funder: ADDvanced Solutions Community Network CIC
Project Team
Amanda Kelly
Research Group: Centre for Applied health Research, Mental health and Neurodiversity