As we mark Patient Experience Week, it is great to see engagement and involvement at all levels of health and social care increasingly becoming the norm. Meaningful engagement in health and care provides a valuable and unique insight into the daily lives and ongoing challenges of patients and carers, which can help ensure services are built around their needs.
In my work, I support the Healthcare Quality Improvement Partnership (HQIP)’s national programme examining poor outcomes in services providing care for children. Through engagement and involvement, an increasing number of parents – especially those caring for children and young people with medically complex needs – are able to share what matters to them.
This also provides opportunities for more high-level engagement with senior professionals and decision-makers. What is now encouraging to see is that these same opportunities are being extended to children and young people so that their voices are heard.
There are many positive examples of where engagement and involvement with parents has worked well. This is often as a result of:
- having a clear idea of the focus and outcomes of the exercise
- being clear about the benefits of involving parents
- understanding the topic area and specific issues that need to be explored
- being aware of any previous research that has involved parents e.g. is there any useful information to build upon?
- using parent and professional networks to reach out to families who are not engaged with the health or care system
- having a range of options in place to make it as easy as possible for parents to be involved, including working outside the Mon-Fri 9-5 timeframe
- providing parents with as much information as possible beforehand so that they understand why their involvement is essential
- feeding back to parents on how their involvement has impacted on the outcome
Can more be done to make it easier for ALL parents to share their experience, particularly when it comes to research projects and service reviews?
Engagement works best and is most meaningful when it reflects different family dynamics and experiences. Thought needs to be given to diversity of representation right at the start of the process. For example,
- Will there be opportunities to engage with care givers other than mothers? e.g. dads, extended family members, grandparents or other carers
- Are there a range of different aged parents engaged?
- Are there parents from communities where language can be perceived as a barrier?
- What about ‘new’ parents who may be shy about taking part?
The ‘how and where’ can be key to this whole process
Some barriers to parents taking part in engagement include juggling caring responsibilities, the timing of engagement activities and having to travel. Embracing creative solutions such as social media forums or online tools such as Zoom or Skype could enable more parents to participate. They are time effective and negate the need to travel.
In any engagement exercise, there is no one size fits all model. We need to balance what is needed with what is possible to ensure that it a positive experience for parents and that they are confident that sharing their experience has made a difference.
If you would like to know more about getting involved in the national clinical audit programme, whether it’s to find out more; to disseminate and share reports with your members; or to be involved in a national audit that’s of interest to you, visit HQIP’s website.