What’s life really like for your beneficiaries in a world struggling to manage Covid-19?
  • June 29, 2020

What’s life really like for your beneficiaries in a world struggling to manage Covid-19?

Why is evidence on beneficiaries’ lives mission-critical for charities today?

Patients are first and foremost people; people who live complex, emotional and demanding lives – never more so than today. Research that listens openly to people’s experience of their health condition, gets to know them at a personal level and captures a genuinely holistic view of their lives, generates evidence that allows charities to ensure those people are at the centre of what they do.

We know that Covid-19 has made things tough for the sector and it’s likely to get tougher. But without fresh evidence into the lived experience of patients bringing about change is going to be challenging. To focus limited resources and to ensure that patients receive timely and appropriate treatment within the NHS needs research and evidence of what life is like for beneficiaries. We believe such research can be truly transformative.

In difficult times investment in research can often be hard to find but it’s worth considering the key issues around the cost, time, resources and over burdening beneficiaries as well as the million-dollar question – will it add value?

 

Cost
Most of our clients obtain an organisation-wide return for the investment with benefits for most department from fundraising, patient services through to communications and policy. Look for support from funders such as trusts and corporates and examine the terms of research programmes to see if they can be extended to include social research.
Over-burdened beneficiaries
It makes sense to worry about over burdening patients at a time when many have been shielding and too many have been unable to access NHS services. However, in our experience we've found that in difficult times many people are grateful for the chance to tell and share their stories.
Time and resources
Undertaking the research internally risks being a draw on skills and capacity whereas commissioning externally means the design, running, analysis and reporting of the research is not only done by specialists but has the added benefit of being independent

 

Time and resources
Undertaking the research internally risks being a draw on skills and capacity whereas commissioning externally means the design, running, analysis and reporting of the research is not only done by specialists but has the added benefit of being independent

We been working with charities to help them improve their understanding of their beneficiaries for many years.

In our research we use quantitative and qualitative methods to immerse ourselves and our clients in the worlds of people with health conditions.  Quantitative surveys generate robust evidence on the realities of peoples’ lives, whilst qualitative methods such as depth interviews or diaries add richness and texture to the picture.

We show the realities of life for people living with a particular condition and have seen the tremendous power this new evidence has had for our clients in driving positive change and impact.

Examples of the studies and their impact for our clients include:

Beating Bowel Cancer: Hidden Heartache study
We discovered that people with bowel cancer, their families and friends feel abandoned, helpless and with nowhere to turn.

Project outcomes:

  1. Shaped organisational strategy
  2. Informed support service development
  3. Used for influencing and campaigns
  4. Used as key fundraising collaterall

The team at Alterline worked hard to deliver a very comprehensive report that told a strong story about what people with bowel cancer and their families face. For many people who took part, it was the first time that they’d been able to express what they were going through. The finished report is a powerful read and call to action, and is being used across the charity including media, fundraising, policy and campaignsElspeth Massey, Beating Bowel Cancer

Read more about this project here.

Bone Cancer Research Trust: Living with, and beyond, primary bone cancer
We described the difficult journey experienced when seeking a diagnosis and the wide-ranging effects of bone cancer’s aggressive treatment regimen. Among those who survive, we’ve revealed serious long-term effects such as mobility issues and fear and anxiety.

Project outcomes:

  1. New strategy and brand to address needs of survivors
  2. Redesign of support services to better meet peoples’ needs
  3. Improved understanding among health professionals
  4. Report used to galvanise financial support

Read more about this project here.

Meningitis Now: Meningitis and Me
We revealed an important and unexpected finding that although viral meningitis is often dismissed as a less serious disease, respondents with after-effects from viral meningitis were just as likely to report that it affected their day-to-day lives as those who’d had bacterial meningitis.

Project outcomes:

  1. Revised strategy and prioritisation of viral meningitis
  2. Growth of support services to better meet needs of both audiences
  3. Underpinned awareness and influencing campaigns and future research priorities
  4. Used across the fundraising and marketing spectrum

On my first day in post I was advised to read ‘Meningitis and Me’ before I did anything else. One year on and we continue to use the report every day: it informs and shapes everything we do, from strategy to daily tasks. The report has had a profound, positive impact on our charity. Rachel Robinson, Interim Chief Executive, Meningitis Now

Read more about this project here.

Royal Osteoporosis Society: Life with Osteoporosis study
We discovered that osteoporosis is truly a silent condition, not just that there are no symptoms until you break a bone but in the silence that surrounds it: ‘I don’t talk to anyone about my osteoporosis. I had no idea what osteoporosis meant, so I don’t expect anyone else to understand.’ The condition has a profound impact: people were giving up the things they love, sometimes because of physical limitations and sometimes because of the fear of breaking a bone. People had emotional insecurity and fear of ridicule because of their changing body shape, concerns over losing independence and in some cases were simply not able to hold the people they love.

Project outcomes:

  1. Underpinned and shaped development of charity’s vision, mission and strategy
  2. Set a baseline to track changes over time as part of demonstrating the charity’s impact
  3. Provided the platform for review of information & support services
  4. Boosted understanding among health professionals, with some describing the report as motivational
  5. Strengthened fundraising activities with powerful stats and case studies
  6. Fostered the charity’s values through listening and care for people with osteoporosis

Read more about this project here.

If you want to find out more or chat about how research into the lives of your beneficiaries could help your charity, please contact Nick Carley, Managing Director at nick.carley@alterline.co.uk