Engaging older people living with frailty

Actively involving patient representatives in research and service development is a well-established strategy to improve the quality, acceptability, and relevance of your project [1]. It also helps you translate research into practice more quickly [2].

Involving older people living with frailty is particularly important as their voices are not often heard, with research and services often being developed “for them” rather than “with them”.  

Older people living with frailty and their carers can:

• Describe the specific challenges experienced by older people living with frailty. This can help you sense-check your proposals, inform and refine protocol and help frame your work to ensure it is relevant for this population.
• Improve materials such as patient information leaflets, consent forms, media resources etc. to ensure they are accessible, relevant and feasible.
• Advise on strategies to support active engagement with your project, without overburdening participants.

Collaborating with older people living with frailty poses unique challenges. As well as the more general challenges of coproducing services with a population who are nearing the end of life, living with frailty is complex and those affected have inherent vulnerabilities [3].

Some approaches to co-production can place too great a burden on older people with frailty.

This means you need to strike a balance between promoting active engagement and not over-burdening representatives. 

1. Be attentive

Pay attention to the person’s energy levels; people living with frailty are at risk of fluctuating capacity. Plan for short engagement activities and build in breaks throughout. Give them space to rest if needed but support them to take part and carry on when they wish to do so.

2. Mind your language

Think about how you recruit representatives. The terms ‘frail’ and ‘frailty’ have many negative connotations, and most older people living with frailty do not recognise themselves as frail. Instead, ask questions that describe what frailty can be, for example: ”Do you rely on others for help to stay independent around your home or when you go out?”

3. Use a portfolio approach

Keep recruitment open throughout your project. This way, if representatives are no longer able to take part, someone else can be actively engaged. Use established groups where relevant and appropriate, but also utilise open networking and individual discussions as relevant and appropriate.

4. Be flexible

Enable representatives to be involved in whichever parts of the project they wish. For some this might be sense-checking the proposed study, while others may prefer reviewing paperwork or being involved in developing interview questions.

5. Work with the older person

How would the person prefer to engage with the study? Would a focus group work for them? Would they prefer email, letter, video conferencing, or home visits? Keep asking this question, as the person’s answer might depend on how they are managing at the time.

6. Reimbursement

Follow the Payment guidance for researchers and professionals - but always ask how the older person would prefer to be reimbursed. Would they prefer a cheque? A specific gift voucher? Transfer to their bank account? A donation?  

7. Travel

If your representatives are happy travelling to you, remember to build in costs to pay for their transport. This might need to include a carer or someone important to them travelling alongside.

8. Refreshments

Provide refreshments for any meetings as normal, but double cater where required – older people living with frailty will often wish for a carer or someone important to them to be with them during engagement activities.

9. Don’t forget those who are important to older people with advancing frailty

Carers and family members can be extremely important for older people living with frailty. Supporting family and carers to take part, as the older person wishes them to, can be crucial in maintaining engagement and power-sharing.

10. Allow time

It requires far more time to be flexible, pay attention to energy levels and work with people as and when they are able, than it does to schedule a group meeting every few months.

So, allow more time than you think you will need and write this into your project plans.

UK Standards for Public Involvement

Produced by the National Institute for Health Research, this is a framework for what good Patient and Public Involvement (PPI) looks like. It is designed to help researchers and organisations improve the quality and consistency of PPI in health and care research. 

Learning for Involvement

Training and resources for Patient and Public Involvement (PPI) in research.

Payment guidance for researchers and professionals

Guidance to support researchers to cost Patient and Public Involvement (PPI) activities throughout the lifespan of a research project.

1. Brett J. et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expectations. 2014; 17(5): 637-650.
2. Blackburn S. et al. The extent, quality and impact of patient and public involvement in primary care research: a mixed methods study. Research Involvement and Engagement 2018; 4(1): 1-18.
3. Bloomer M.J. et al. Dying persons’ perspectives on, or experiences of, participating in research: An integrative review. Palliative Medicine 2018; 32(4): 851-860.