Anti-Racism in Social Care

Some of our Consultancy and Research Projects

Consultancy

Client: The project was led by Practice Solutions representing the Association of Directors of Social Services Wales (2024).
Focus: Anti-Racism in Social Care Workplaces (Funded by Welsh Government)

The aim of the project was to evaluate and address the presence of racism in social care delivery. Through an anonymous survey with 500 responses and in-depth interviews, we identified key areas where racism impacts workplace dynamics and service delivery.

How We Helped:

  • RareQoL EDI consultant Humie Webbe, advised on the research design and lead most of the focus group Humie co-authored a comprehensive report outlining seven key recommendations to eliminate racism in the workplace.
  • Dr Sondra Butterworth had a role as a research ‘Critical Friend’. Sondra provided guidance on trauma-informed interviewing techniques for focus groups. Sondra conducted a thematic analysis of policies to identify racial bias in recruitment and promotion practices and contributed to the final report.

A poster including a smiling boy from an ethnic minority community.
Eczema Focus Group

Client: The project was led by Intent Health (2023)
Focus: Understanding the experiences of eczema on children with non-white skin.

The aim of the project was to better understand the effects of eczema to educate the health care profession.

How We Helped:

  • Dr Sondra Butterworth helped with the recruitment of participants from ethnic minority backgrounds from the RareQoL network.
  • Sondra acted as a Trusted Advocate, distributed the flyer to the networks and fielded questions from the community about the study.
  • Sondra attended the focus group as to support the participants feelings of trust and psychological safety.

Whit poster with a graphic represented a process journey. Includes five sections in pink, purple, blue, yellow and red.
Red-Flags-patient-journey

Health Equity in Rare Disease Diagnosis

Client: Medic 4 Rare Diseases (2023)
Focus: Health Equity & Diagnostic Journeys

How we helped

Dr Sondra Butterworth as a mixed researcher, was commissioned by Dr Lucy McKay, CEO from Medics 4 Rare Disease. Sondra worked as part to the research team led on the thematic analysis of the qualitative data sets from the patient group narratives. The aim was to identify common red flags in undiagnosed rare disease cases.

The data set was combine with the quantitative dataset, discovered how biopsychosocial factors impact patients’ diagnosis journeys.

Outcomes:

  • Highlighted how many patients wait over 10 years for an accurate diagnosis, leading to an industry-wide discussion on early detection in rare diseases
  • Results integrated into medical education to improve the diagnostic process for rare disease patients.

Nine barriers to inclusion
EDIRA: Nine Barriers to inclusion.

Research Project: Equality, Diversity, and Inclusion in Rare Disease Research (2023)

Partnership with : University of Chester and RareQoL
Focus: Inclusion & Research Ethics for Rare Disease Communities

Dr Sondra Butterworth and Associate Professor Andrew Mitchell from the university of Chester, gained ethical permission to undertake a small study evaluating barriers to participation in research The findings identified nine barriers to inclusion. We successfully published a paper Designing an accessible and equitable conference and the evaluation of the barriers to research inclusion for rare disease communities | Sondra Butterworth – Academia.edu.

How We Helped:

  • Dr Sondra Butterworth co-designed and led the research study and participant recruitment.
  • Co-wrote and published an academic paper detailing the findings

Outcomes:

  • Identified barriers to inclusion, driving the development of future research on Building Trust within rare disease communities
  • Results shared at industry conferences and in academic publications
  • Follow-up research focused on “The Trust-Success Ratio” is in progress.

A blue poster with a two profile pictures in cream
Dr Sondra Butterworth and Humie Webbe


Rare Care Centre: Funded by NIHR (2024)

Client: Realise Advocacy

RareQoL are part of the Patient Participation Engagement and Inclusion (PPIE) team for this important study. It’s aim is to determine if the UK Rare Disease Framework is benefiting people affected by rare diseases in England, how we should measure its performance, and how we could improve it.

A poster with graphics of a diverse group of people talking
Focus group

Learn Study: Listening to the experience of participants in neurosurgical trials

Client: Cardiff University(2023)
Focus: Parkinson’s Disease: experience of people from ethnic minority communities

How We Helped:

Sondra attended the focus group as to support the participants feelings of trust and psychological safety. RareQoL conducted a pivotal study with the University of Chester, evaluating barriers to participation in rare disease research from a diversity and inclusion perspective. The findings uncovered nine critical barriers—ranging from cultural competence to economic status—that prevent full engagement of ethnic minority populations in research.

Dr Sondra Butterworth helped with the recruitment of participants from ethnic minority backgrounds from the RareQoL network.

Sondra acted as a Trusted Advocate, distributed the flyer to the networks and fielded questions from the community about the study.


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