A University of Warwick team has carried out a piece of research to review all the current academic research on digital interventions that are available to support family carers whose loved ones have a learning disability or are autistic.

Family carers whose loved ones have a learning disability or are autistic were partners in this piece of work. Their role was to offer insights from their lived experience to the researchers with the aim of improving the quality of the research. Family carers were paid for their time.

This type of research, called a systematic review, has involved methodically finding and carefully reading every academic paper that has been written about digital interventions to support family carers. From a starting point of many thousands of possible papers, the team found 23 that were relevant.

The 23 papers were read and analysed, and the results are important as they:

• tell us what makes digital support effective for families and what doesn’t
• help identify where there may be gaps in support for family carer wellbeing
• can support the development of further interventions that are most effective for family carers
• have the potential to help family carers be clear about what they can expect from digital interventions and give honest feedback, if asked to do so, about the services they receive.

A number of recommendations for implementing digital wellbeing interventions with family carers were made in the studies included in the review. Here are some of the findings from the review:

• Providing interventions in a digital format (online or virtually) is helpful.
• Connecting with other carers can be helpful.
• Finding ways to catch up with missed sessions was important.
• Flexibility around the time of interventions to allow family carers to attend was important.
• Providing an orientation session for family carers to get used to the technology was helpful.

The comprehensive approach of a systemic review means that the points summarised here can serve as a useful guide of topics to consider for those developing new or updating existing digital wellbeing interventions for parent carers. As further research is undertaken, these recommendations may change as more is learned about how best to support parent carers using digital tools. The involvement of parent carers throughout the development and running of these interventions is key to ensuring the interventions have a meaningful and beneficial effect.

Taking part in research as a family carer

I am a family carer, my career has not had a research focus so when I was asked to be involved in a systematic review, I was not sure that I would have anything to offer.

The process has been both fascinating and enlightening. The researchers painstakingly and systematically (there is a reason that that word is in the title) worked through all the literature that was available on digital wellbeing interventions for family carers. From a starting point of many thousands of papers they ended up with 23 papers to evaluate.

As a family carer it became apparent that I didn’t need to fully understand this academic process, that was not the point of my involvement. My involvement and that of my family carer colleague was to view the results from a family carer perspective and to offer comments to the researchers. Again, initially I thought I might not have anything to offer but at every meeting we found there were questions to ask, and we made contributions that were welcomed. To give an example of a question – we asked if the papers specified whether the digital wellbeing interventions were for family carers of adults or children?

If you are a family carer with no background in research and are asked to participate in a research study – please know that you do have something to offer. Your insights from your lived experience will bring a different perspective and your participation is genuinely valued. If you are asked to participate – I do hope you say yes.

Debbie Austin, Family carer