Setting the NICHE-Leeds scene

The NICHE-Leeds Engaged Family and Friends Panel launch was advertised across Springfield Healthcare and Westward Care organisations in February 2022. Myself, and five other relatives, attended an evening launch via Zoom on March 23^rd; the option of an evening meeting was welcomed by all of us. The meeting commenced with the NICHE-Leeds story, with presentations from the range of partners – academics, care home staff, and family members to describe:

• why NICHE-Leeds exists
• what partnership working is and means
• why and how relatives get involved
• the topics NICHE-Leeds are working on

The team described that prior to the pandemic there were regular opportunities to engage with residents and their family and friends about NICHE-Leeds, but restrictions due to COVID-19 had reduced these opportunities. The Engaged Family and Friends Panel launch was a way of reactivating and promoting family involvement in NICHE-Leeds activities and conversations.

Hearing from NICHE-Leeds family members

A key part of the launch was to hear from relatives currently part of the NICHE-Leeds group. Edna and Karen have actively engaged with NICHE-Leeds since 2019. They described their experience. Hearing from other relatives with similar experiences was powerful and reassuring. Karen and Edna were able to explain how they had been involved in different stages of research projects (The COMMIT study and The REACH study), including being involved in key stakeholder meetings, and being supported to develop new digital skills to enable their involvement through the pandemic.

Relatives new to NICHE-Leeds were able to share their personal experiences and ask questions: which Karen and Edna were able to answer. There was a rich mix of relatives at the meeting who spoke openly about their experiences, and there was a palpable connection and respect for each other among the group members. It was evident that COVID-19 and restrictions had an enormous impact for all family members. There were wide ranging discussions about maintaining the identity of a family member, supporting the resident and family with transition to the care home and as the resident’s situation changes, meaningful engagement in activities to promote quality of life, supporting emotional health and well-being, as well practical frustrations with laundry services. The discussion was lively, providing thoughtful insights and moving examples of what matters for family members. Being able to engage and interact with people that understood and shared their experiences in a safe space was highly valued by relatives in our group.

Moving Forward

We all agreed we wanted to meet again, and regularly! Options were discussed and we have agreed to meet monthly through online meetings (for now). Membership has been left ‘open’ so that relatives can ‘come and go’ as they wish and feel able.

It was explained that there are multiple ways of relatives becoming involved in NICHE-Leeds, from simply being informed of progress by email, to engaging in discussions via the Engaged Family and Friends Panel , through to active involvement in the research process.

Amy’s thoughts

My attendance at the forum was a valuable and cathartic experience. As a relative I feel largely powerless to affect change. Attending this forum reassured me that the frustrations I have are not uncommon. I felt inspired to use my experience and knowledge to support care of my relative through contribution to NICHE-Leeds research and development activities. The Engaged Family and Friends Panel is a fantastic opportunity for proactive involvement in an initiative where all stakeholders work collaboratively for the benefit of care home residents and staff.

This blog has been written by Amy Hunter, a care home family member. Amy Tweets @aeh_health

For more information about NICHE-Leeds visit their website – https://niche.leeds.ac.uk/ and follow them on Twitter – @LeedsNiche

Members of the NICHE-Leeds team involved in setting up the NICHE-Leeds family panel include:

Karen Spilsbury, Professor of Nursing at the School of Healthcare, Faculty of Medicine & Health, University of Leeds. Tweets @SpillersK

Reena Devi, Senior Research Fellow, School of Healthcare, University of Leeds. Tweets @_DrReenaDevi

Kirsty Haunch, Research Fellow, School of Healthcare, University of Leeds. Tweets @KirstyJHaunch  

Magda Oliveira Jordao, Research Fellow, School of Healthcare, University of Leeds. Tweets @JordaoMagda

Iria Cunha, Wellbeing Development Manager, Springfield Care Villages. 

Paul Torrance, Operations Director, Westward Care Ltd

Edna Feenan, a member of the public with personal experience of care homes

Karen Winterburn, a member of the public with personal experience of care homes