Resources

The Children’s Palliative Care Education and Training Standard Framework (CPCET Standard Framework) was developed to standardise children’s (0-18 years and prenatal) palliative care learning.

The Framework and self-assessment tool is not intended to regulate or limit education programmes, but to provide a framework which it is hoped educationalists will use to coordinate and quality assure their programmes.

It has been designed in four levels, Public Health, Universal, Core and Specialist, making it suitable for people from a variety of professional backgrounds including those working directly with children with palliative care needs such as healthcare professionals and carers through to those who design, evaluate and advise others on the delivery of care to children and their families.

The four levels have been designed to work as stand-alone resources or can be combined to suit a particular role. The Framework details the education level, learning outcomes, suggested indicative curriculum content and assessment for each of the four levels.

A self-audit tool enables programme leads to evaluate their courses. The CPCET Standard Framework can be downloaded for free online: 

Children’s Palliative Care Education Standard Framework and Self-Audit Tool (CPCET)

Further information and details of processes undertaken to develop the Framework can be found online:

Children’s palliative care education and training: developing an education standard framework and audit

An appendix to the CPCET Standard Framework has been developed for those involved with advance care planning. The same four sections have been used but additional content includes content exemplars focusing on Skills, Understanding (knowledge), Values (attitudes) and the suggested assessment exemplars cover education and clinical settings.

The Education Standard Framework for Advance care Planning for Children can also be downloaded for free from the International Children’s Palliative Care Network (ICPCN) webpage:

Children’s Palliative Care Education Standard Framework and Self-Audit Tool (CPCET)

For over 17 years, our research team has identified disparities in healthcare experienced by minority ethnic groups in rheumatology, resulting in poorer health outcomes and increased service utilisation. The current one-size-fits-all healthcare approach exacerbates these disparities.

In a ground-breaking effort, we convened a multidisciplinary team consisting of patients, families, patient organisations (e.g., National Rheumatoid Arthritis Society - NRAS), clinicians, community leaders, and the City Council. We successfully implemented innovative solutions based on our research, warranting recognition. We are making a shift from just medical organisations to the people they serve.

Dr Kanta Kumar, Associate Professor in the School of Nursing and Midwifery, established a collaborative effort with the National Rheumatoid Arthritis Society (NRAS), under the guidance of Mrs. Ailsa Bosworth (past CEO). The objective was to establish a dedicated webpage within NRAS that would serve as an educational platform, providing comprehensive information about rheumatoid arthritis (RA), emphasising the significance of medication adherence, early treatment, and self-management strategies.

This initiative, named Apni Jung (translated as "our fight against") RA, was specifically designed to cater not only to patients who face language barriers, but also to individuals born in the UK who may have non-English speaking parents, thus facilitating education for the entire family unit. Apni Jung is now featuring in every rheumatology clinic across the UK. 

We have set a dedicated Apni Jung Committee Board. The Apni Jung contains patient education within cultural context – in Hindi and Punjabi on:

• Having inflammatory arthritis – the early journey from primary care to secondary care
• Patient stories
• Talking about medication adherence
• Talking about advanced therapies to control the disease
• Cardiovascular risk knowledge
• Clinical stories 

For further information on the Apni Jung initiative, please visit our website:

Apni Jung - National Rheumatoid Arthritis Society

Time period

• 2022-2023

Beneficiaries

• Patients living with a long-term inflammatory disease from all ethnic backgrounds but particularly those from minority ethnic background 
• Healthcare professionals

Activities

Breaking new ground in rheumatology practice, we pioneered a tailored, culturally sensitive intervention programme for healthcare professionals (HCPs). The first of its kind, this ground-breaking study led to remarkable improvements in clinical consultations. 

Our freely accessible intervention programme is offered to the prestigious British Society for Rheumatology, the European Alliance of Associations for Rheumatology, and the American College of Rheumatology registrations and it is being an ambassador.

We are making this invaluable resource the gold standard in cultural competency interventions, ushering in a new era of patient-centred care worldwide. Our study is embracing the power of cultural sensitivity.

Results change

200 patients were recruited before HCPs undertook the intervention (cohort 1), and 200 were recruited after (cohort 2) from fifteen HCPs, after exclusions 178 patients remained in cohort 1 and 186 in cohort 2. Patients identifying as White in both recruited cohorts were 60% compared to 29% and 33% of patients (cohorts 1 and 2 respectively) who identified as of South Asian origin.

After the intervention, the COM-B scores indicated HCPs felt more skilled and equipped for consultations. In the South Asian cohort, there was a statistically significant improvement in mean scores (64.1 vs 56.7, p=0.014) of cultural competency. Overall, the enablement score also showed a statistically significant improvement following intervention (7.3 vs 4.3, p<0.001) in the White patients; and in the South Asian patients (8.0 vs 2.2, p<0.001). 

The tide is turning in the fight against health disparities, and we are leading the charge! For the first time, we've brought to light the crucial need to skill up healthcare professionals in rheumatology to bridge the gap. The British Society for Rheumatology is taking action, offering our ground-breaking programme to new medical trainees and allied health professionals, setting a powerful precedent.

We've engaged with local Trusts to extend this invaluable training to new NHS staff, revolutionising cultural competency care. By equipping our workforce with the right tools, we are transforming clinical consultations and paving the way towards equitable healthcare for all. And the ripple effect is in motion! The Royal College of Physicians joins our ranks, embracing innovation in cultural competency. 

Underpinning research

Our profile of research, proudly features in top-tier Q1 and Q2 rheumatology journals, has exposed the stark reality of health disparities, particularly among minority ethnic populations. These findings have revealed poor clinical outcomes and shed light on a significant contributing factor – the critical role of healthcare professionals (HCPs) in the clinic.

Leading the charge, Dr Kanta Kumar and our exceptional team earned a prestigious fellowship from the British Society for Rheumatology. Our mission: to tackle this pressing issue head-on within early inflammatory arthritis clinics, where effective consultations are paramount for patient engagement.

Delving into the perspectives of both HCPs and patients from South Asian backgrounds, we made a ground-breaking discovery. Rheumatology HCPs expressed a deficiency in the skills needed to connect effectively with patients of South Asian origin. Their lack of confidence in providing support to this patient population led to perceived deficiencies in engaging with them, ultimately impacting patient satisfaction with clinical services.

HCPs identified the solution! And we delivered the solution. Our pioneering preliminary studies pinpointed a crucial need for interventions that address consultation skills and establish culturally sensitive services. We are bridging the divide, empowering HCPs, and elevating patient care to new heights. Links to papers can be provided upon request. 

Outputs

Deshmukh A, Roberts L, Adebajo A, Kamal A, Armitage CJ, Evison F, Bunting H, Dubey S, Moorthy A, Reehal J, Dogra N, Kumar K. Development and testing of a bespoke cultural intervention to support healthcare professionals with patients from a diverse background. Rheumatology (Oxford). 2024 May 2;63(5):1352-1358. doi: 10.1093/rheumatology/kead383.

Gender-based violence (GBV), including sexual violence, is one of the most severe consequences of gender inequality. It takes place around the world, but survivors in low- and middle-income countries (LMICs) often face specific problems, as a result of inadequate state responses to this violence, and because of cultural or religious norms that blame survivors for experiencing this violence, leading to their stigmatisation or even rejection. Therefore, GBV has severe physical, emotional, social and economic effects.

Research is crucial to better understand the causes and consequences of GBV, as well as the experiences of those who have faced it. Such understanding is vital for designing actions and policies to end all forms of GBV.

This has led to the field of gender-based violence becoming an important research area, addressed by academic and civil society researchers from diverse disciplines and perspectives. But researching GBV is not without risks. Participating in research can cause the re-victimisation of survivors, through the recall of painful events. It can also put survivors at risk, if the perpetrators of violence are still close to them Participants can also be at risk of stigmatisation and exclusion within their communities if their involvement becomes known. 

A University of Birmingham-led project, funded through the Institute for Global Innovation and the Global Challenges Research Fund developed a set of international guidelines to address the problem. The guidelines are entitled: Ensure No ‘Grab and Go’ Extractive Research (ENGAGE)' guidelines. The researchers involved in this project all had experience in doing research on GBV in LMICs, with team members coming from Kenya, Uganda and Guatemala. The purpose of the guidelines is to contribute to the setting of a global standard for research engagement with survivors of GBV in LMICs. 

The guidelines are available to read online: ENGAGE | Ensure No 'Grab and Go' Extractive Reseach.

• Global Health Impact Hub - University of Birmingham
• Global Health Research Network - University of Birmingham
• Current Global Health Research - University of Birmingham
• Global Health - University of Birmingham