Parent carers, who provide regular care to children with special educational needs and disabilities, prioritise the needs of their children but sometimes at the detriment of their own health and wellbeing. A recent study has discovered ways to overcome significant barriers preventing some parent carers from accessing health promotion programmes designed to improve their mental and physical well-being. The research, carried out by University of Exeter researchers, and supported by PenARC, highlights the unique challenges parent carers face, particularly those from underrepresented and marginalised backgrounds.
While programmes like Healthy Parent Carers aim to improve the health of parent carers, it is vital that these programmes are inclusive of all backgrounds, for example those from ethnic minority groups, fathers, individuals with sensory impairments, and families whose children are not educated within the traditional school system.
Inclusive Research Efforts
To understand these challenges better, our parent advisory group guided research efforts and helped to identify groups that were more likely to be excluded from health programmes and therefore vital to include in the study. The study involved online interviews with 36 parent carers from diverse backgrounds. Through these interviews, researchers were able to pinpoint key obstacles that make accessing health support services difficult and find solutions to improve inclusivity.
What was have learnt: Reach, Credibility, Opportunity, Optimisation, Reservations.
The study identified five main barriers to engagement with health programmes: Reach, Credibility, Opportunity, Optimisation and Reservations.
- Reach: Many parent carers are unaware of health promotion programmes due to a lack of engagement online with social media, mailing lists or forums, with questions on how to get information. The research found that it’s essential when advertising to identify groups of parents potentially being missed and find a way to reach them.
- Credibility: Trust plays a crucial role in the success of any health promotion programme. The study found that health programmes are more likely to resonate with parent carers who see and hear from ‘people like me’ or ‘word of mouth’. The research team found that this could be achieved by creating a track record of community engagement and showing a deeper understanding of different cultures, values and needs.
- Opportunity: One challenge the research found, was that due to cultural and social norms, individuals may not identify as “parent carers” and therefore may not realise the benefits that programmes can offer. They need to feel as though the health programmes are relevant to their life, and must be there to provide an opportunity. When advertising these programmes, the study found that clear and appealing messages need to be created for the target audience, using inclusive language, and being culturally appropriate and accessible.
- Optimisation: In order to engage an inclusive audience in the health programme, it was important to bear in mind what reasonable adjustments needed to be made. Nurturing a sense of ‘togetherness’ and belonging can help attendees to feel comfortable taking part.
- Reservations: The research found that parent carers, some more than others, can be uncertain about participating in health promotion programmes due to social, emotional and practical reasons. Barriers can be broken down, for example, by creating comfortable social spaces for parent carers to meet each other in their community where the programme can be discussed.
Recommendations for Change
Based on what the study found, researchers developed recommendations to engage participants from usually excluded groups of parent carers. Efforts to engage underrepresented groups could focus on outreach strategies, inclusive language, creating welcoming social spaces and making information more accessible. Building a sense of community and connection helps to break down barriers, encouraging broader participation. By making health programmes more inclusive, providers can ensure that all parent carers have access to the support they need.
Summary
The research also encourages further exploration into how health programmes can be continuously refined to address the diverse needs of parent carers. The full study, titled Ensuring equitable access, engagement and ability of socially and ethnically diverse participants to benefit from health promotion programmes: a qualitative study with parent carers of disabled children was published in the journal Frontiers in Public Health.
The team that carried out the research are:
Authors

Alice Garrood
Healthy Parent Carers Project Manager/Research Fellow
Fleur Boyle
PenCRU Administrator
Professor Stuart Logan
Director of PenARC and Methods for Research and Improvement Theme Lead
Bel McDonald
PenCRU Family Involvement Co-ordinator