We offer research consultancy services for charities, community groups, and public sector organisations.
Our research activities include a range of methods.
This page includes some of our research projects.
Our research approach is influenced by the principles of community psychology. This includes respect for equality and diversity, empowerment and participation. We promote co-creation and a mix of both quantitative and qualitative research methods. Our research projects aim to deepen the understanding of the lived experience of under-represented communities.
A community could be defined as a group of people living in the same place or having a particular characteristic in common. These are communities that may be defined by their ethnicity, culture, disability, age, location or rare disease. As a grassroots social enterprise, we recognise the importance of understanding the expressed needs of the people we support.
The World Health Organisation presents a holistic definition of health, stating that Social Determinants of Health include: social support networks, support from families, friends and communities.
We are challenging the medical model of health and support and advocating a narrative based bio-psycho-social approach to support diverse rare disease communities. RareQoL is a community based social enterprise. One of our principal goals is to work with groups to promote and support community-based research and evaluation.
Research can be defined as a careful study of a subject or group to discover new information and to gain a deeper understanding of a research problem.
There is often an assumption that research is only undertaken by health or social care professionals in clinical or academic settings. Community-based groups do not often lead or drive research projects…
WE WANT TO CHANGE THAT
The mixed-method can include a combination of traditional research methods such as drug trials but can include surveys, focus groups, questionnaires, and interviews, stories and observations.
The aim of this study was to explore the relationship between quality of life (QOL) and social support in adults living with rare genetic skin conditions, specifically Epidermolysis Bullosa (EB) Ehlers-Danlos Syndrome (EDS) and related conditions.
Background:
Measuring QOL has become an increasingly important method of evaluating the effectiveness of health and social care interventions. Living with the effects of a rare genetic condition has a profound impact on QOL for the individual and families.
Design:
Methodological triangulation was adopted, in a sequential mixed method exploratory design. Three stages were included: a literature review, an online survey (n=31), and semi-structured interviews (n=8).
Outcomes:
The literature review concluded that professionals should adopt a biopsychosocial approach to the management of rare diseases. The online survey found a positive correlation between QOL and social support. The role of the family was a prominent theme. Most participants indicated that emotional support was provided by family carers, and tangible (practical) support was the highest-rated support need.
Conclusion:
This study demonstrated was that health and social care practitioners, policymakers and commissioners have to make room for QOL perspectives that come from the patient. These are wounded storytellers whose narratives are subjective but are spoken through illness. Their collective experiences can influence the direction of their diagnostic journey and must be front and centre of any rare disease implementation plans in a post COVID era.
Keywords:
Mixed methods, triangulation, interpretive phenomenological analysis. rare genetic conditions, QOL, social support, need, epidermolysis bullosa, Ehlers Danlos syndrome, social prescribing, disability, stress, COVID-19, QALYs.
Genetic Alliance UK the is largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK. Their members and the people they support are at the heart of everything they do
What Genetic Alliance UK say:
“The pandemic has also shone a light on the increased health inequalities experienced by many marginalised groups in the UK, especially those from a black or minority ethnic community. This rare disease day we want to shine a light on these often-not-heard stories”. Genetic Alliance UK.
As part of their ongoing commitment to shine a light on the needs of under-represented communities, GAUK has commissioned RareQoL to complete an EDI review of the Equality, Diversity and Inclusion practices undertaken by the charity.
The EDI review team are Dr Sondra Butterworth PhD and EDI Consultant Humie Webbe MBA
Dr Sondra Butterworth works as a researcher at Swansea University and is involved in a current study that aims to identify the changing support needs of people with dementia and their carers during the pandemic. This is a qualitative study using a thematic analysis approach.
The study is composed of three parts:
1: An initial review of relevant literature, of group support for carers of people living with dementia to identify current understanding of the impact of group support, and of the closure of groups.
2: The second part will be to identify through group leaders, how groups have adapted to support carers since lockdown.
3: Seek to engage with carers for those living with dementia to provide a description of issues faced.
The overall aim of the study is to identify and share strategies that organisations and support groups can implement. This is to improve service provision during a lockdown that would also benefit carers and people with dementia who are unable to attend support groups.
Dr Lucy Mckay CEO from M4RD commissioned Dr Sondra Butterworth to assist with the analysis of the data sets from their Red Flags Survey which was conducted in 2018. The purpose of the survey was to find out what different rare diseases have in common during the time before diagnosis: a period often called ‘the diagnostic odyssey’.
Dr Lucy McKay says
“It is common knowledge that receiving an accurate diagnosis is often one of the biggest hurdles that a patient with a rare disease will face in their life. Red flags are symptoms or signs which raise the possibility of an underlying disease. We hope the results of this survey will enable us to produce an educational tool for clinicians that will help them recognise when a patient has a rare disease. We have called this tool “The Red Flags of Rare Disease”.
“We will share the outcomes of the survey publicly and are aiming to publish any significant results”.
This was a joint project led by Metabolic Support UK (MDUK) in collaboration with Oxalosis & Hyperoxaluria Foundation (OHF) Rare Renal Disease Registry (RaDaR) and Rare Quality of Life (RareQoL).
Purpose of the study?
HyperOxaluria is a group of rare genetic renal metabolic disorder where the body cannot get rid of a metabolite called Oxalate. Oxalate accumulates inside the body most commonly kidney and the urinary system resulting in the formation of stones and other multi-organ deposits. We want to understand the challenges faced by this small patient community so we can prioritise the unmet needs. We want to tailor services provided by Metabolic Support UK and advocate for better healthcare services on a national level.
Aim of the study?
To highlight the patient and/or carer experience with disease management practices and interactions with healthcare providers. We want to find out about the current diagnostic, treatment, and care pathway options. Also, the impact on the patients’ quality of life and emotional wellbeing throughout the care pathway.
Metabolic Support UK
RareQoL head office is based in the centre of a rural Welsh community and wanted to provide activities and resources which would promote wellbeing for our rural community. We looked to the guidance in the Well-being of Future Generations (Wales) Act 2015 which sets out seven well-being goals:
1. A prosperous Wales
2. A resilient Wales
3. A healthier Wales4. A more equal Wales
5. A Wales of cohesive communities
6. A Wales of vibrant culture and thriving Welsh language
7. A globally responsible Wales.
We put together a survey and asked the community to let us know what activities or resources would help their wellbeing when coming out of lockdown. The top response was the need for a community bilingual wellbeing newsletter.
Using the response from the survey and the guidance in the Well-being Act, we applied to the National Lottery for funding to assist our activities. With support from our community, our bid was successful and we are now working to develop our first newsletter edition which is due in the Spring of 2022.
