Parent carers of disabled children tend to have poorer mental and physical health than other parents. Researchers and parent carers have co-developed the Healthy Parent Carer programme to improve the health and wellbeing of parent carers of disabled children.
The programme is exclusively led by parent carers and involves working with others in a group to encourage behaviours associated with better health and wellbeing. The behaviours are called CLANGERS: Connect, Learn, be Active, Notice, Give, Eat well, Relax and Sleep, and are based on a book by Dr Phil Hammond.
The topic of parent carers’ health and wellbeing was initially brought up in a PenCRU Family Faculty meeting. Since then we have worked on developing the programme, which is guided by three groups:
1. Parent carers from the PenCRU Family Faculty, who meet regularly to discuss and provide feedback on each of the stages of the programme development and testing;
2. Stakeholders, such as members of relevant organisations and charities; and
3. Experts in health-related psychological and behavioural interventions.
The logic model for HPC describes how it works through (i) facilitated group-based activities and discussions (delivered in-person or online by trained peer Lead and Assistant Facilitators), and (ii) health-related information and resources.
This peer-led group-based programme creates conditions for change through social and emotional peer support, harnessing a shared social identity as parent carers who want to improve their health, sharing experiences and strategies, and embedding health-promoting behaviours.
Evaluation addresses the APEASE criteria: acceptability, practicability, effectiveness, affordability, side-effects, and equity
In-person delivery and evaluation
First, we tested acceptability and practicability of a 6-week in-person group programme for seven parent carers led by peer Lead and Assistant Facilitators. This was highly successful and feedback informed refinement of the intervention content and delivery strategies.
Next, we evaluated the feasibility of delivery in community settings and a randomised controlled trial design and cost-effectiveness analysis in a study funded by NIHR RfPB programme. The feasibility trial showed that we could recruit and train facilitators and that they can deliver the programme with fidelity. In-person Training and Delivery Manuals were produced and refined.
Progression criteria in our feasibility trial were met, making it reasonable to proceed to a definitive trial that can evaluate effectiveness and cost-effectiveness.
Remote delivery using Zoom
Social distancing mitigations in the pandemic meant that HPC could not be delivered in-person so it was necessary to adapt the programme to be delivered remotely using Zoom. We modified the programme and worked with our Family Faculty public involvement group to ensure acceptability through a series of iterative user tests. Online Training and Delivery Manuals were created.
Working with the Council for Disabled Children and Contact enabled us to explore barriers and enablers for partner organisations to manage facilitators, advertising and delivery.
The HPC programme was delivered online successfully to groups of 10 parent carers in London and Manchester providing preliminary evidence of acceptability to participants. Online training and delivery worked well generally and may prove more accessible, cheaper and cost-effective.
We have received much interest in the HPC programme from potential provider organisations. This is partly explained by a lack of provision for parent carers pre-pandemic, and growing recognition of the need for support for parent carers as the adverse health, social and economic impacts of the pandemic continue for many families with disabled children.
With university commercialisation support we created terms for a non-exclusive, not-for-profit licence. With increasing interest and growing demand, we are being commissioned to train pairs of Lead and Assistant Facilitators who will deliver in their locality, indicating affordability and acceptability to providers.
We seek and reflect on feedback from all participants and facilitators. We need to ensure that the HPC is accessible and acceptable to all parent carers, to enable equitable access for those who might need it most, and to reduce the risk of the intervention reinforcing health disparities.
You can find out more about our current research project evaluating the effectiveness of the programme here.