Safety in Marginalised Groups
Some people may find themselves outside of mainstream society, due to social, economic, cultural, or health reasons. These marginalised individuals are more likely to face health challenges, have poorer access to services and experience increased patient safety risks.
Historically, those who are marginalised are seldom heard and less likely to get involved in research. The Safety in Marginalised Groups theme has been designed to help change this in order to ensure patient safety innovations can be co-designed to address the needs and particular patient safety risks experienced by people who may be considered marginalised.
Marginalised groups face heightened patient safety risks. Two subthemes were created:
- Mental Health
- Patient and Carers
This theme and its subthemes build on work done as part of the previous NIHR GM PSTRC centre which operated between 2012 and 2017. It continues to work towards improving safety for some of the most marginalised people in our communities. We involve members of the public at the design stage of our research, right through to implementation, and our projects include a focus on the following:
- Experiences of people living with sensory and cognitive impairments
- Specific adverse outcomes – including suicide and self-harm
- Children and families
- People experiencing homelessness
- Experiences of people from Black and Minority Ethnic communities
Public involvement and engagement is embedded across our all our research, which allows insights and improvements to the quality and safety of service
This topic explores suicide and self-harm in primary care patients. It builds on work in the 2012-2017 Greater Manchester PSTRC on self-harm in older adults, medicines usage and suicide, and clinical management of depression and self-harm in adolescents and young people.
The topic is further developing world-leading research programmes being conducted at The University of Manchester's Centre for Mental Health and Safety.
We are addressing two main questions:
- When major changes to mental health services are implemented, what are the most important 'active ingredients' that serve to reduce risk of self-harm and suicide?
- How does organisational context influence the beneficial impact of these service changes?
One of the key data sources being utilised is the unique National Confidential Inquiry into Suicide and Homicide by People with Mental Illness, which is a UK-wide case series of all suicide deaths occurring in mental health services since 1996. The Inquiry datasets enable us to create a platform for developing a practical 'how-to' toolkit for mental health services to improve safety.
Other specific projects focus on:
- developing and testing strategies to improve provision of psychological treatments following self-harm;
- testing a brief theory-based psychological intervention (the 'volitional help sheet');
- conducting cohort studies of key transitions after discharge from inpatient psychiatric care and release from prison to living back in the community;
- examining clinical management and subsequent risks of self-harm and premature death among people diagnosed with common mental disorders in primary care (such as depression, anxiety disorders, and eating disorders).
Theme researchers are also involved in affiliated projects The Manchester Self-Harm Project (MaSH), the National Confidential Inquiry into Suicide and Safety in Mental Health, and an NHS England transformation programme to establish new and integrated models of primary and community mental health care across England.
- Professor Carolyn Chew-Graham
- Dr Faraz Mughal
- Professor Jenny Shaw
GM PSTRC PhD Fellow
Patients and Carers
This subtheme is focussed on understanding the needs for supporting safety among marginalised groups, and to inform new interventions for meeting these needs.
The following research is underway:
1. Cystic fibrosis Self-Management in Adolescence: A qualitative study to explore the safety concerns of adolescents, parents and healthcare professionals
The transfer of complex self-management roles and responsibilities from Health Care Professionals (HCPs) to families and within families themselves, along with the various stakeholders involved in the care of a young person with Cystic Fibrosis (CF), has the potential to lead to safety concerns for families and HCPs. However, there has been little research to investigate such concerns. This study aims to explore how adolescents, parents and clinicians specialised in CF care perceive safety issues relating to CF self-management.
A scoping review will be done to investigate relevant research and potential gaps. This will be used to inform research using in-depth interviews via Zoom and a bespoke online tool developed to enable creative data capture (photographs, drawings, post-it notes) to represent experiences of children and young people.
2. Co-design and evaluation of a patient safety guide for patients and carers – delivered via a paper guide, mobile app and website
The patient safety guide is a package of support specifically designed to be used by patients and carers. To ensure it can be used by the people it’s designed for, there’s a paper-based version as well as a website and mobile apps for both Apple and Android devices. It aims to support patients and carers to help them deal with health questions and make their care safer.
The guide is an example of the centre’s overall approach of working together with patients and the public to develop interventions. This public engagement has been extended to explore how the guide could impact people with experience of sensory impairments and people from BAME communities. The guide is being tested with patients and carers across Greater Manchester and has been adapted to respond to changes in care as a result of COVID-19.
Impact of COVID-19 on the intervention
The pandemic has meant, in general practice, it’s more likely patients’ health queries are now handled remotely via phone, email or video call. As a result, the guide has been adapted along with the research which is evaluating how it’s being used.
For further information contact Rebecca Morris.
3. Homelessness and patient safety
Despite high levels of health and social care needs, people experiencing homelessness often have poor access to services leading to their health declining further. They often face barriers. Stigma is also a hurdle which can mean the experience of services is poor. This can cause problems such as:
- Lack of continuity of care
- Difficulties in transitions between services
- Discharge back to the streets, which has been highlighted as having a major impact on prolonged suffering and preventable deaths.
As a result, researchers from the GM PSTRC are working in partnership with Groundswell which is a charity that works with people experiencing homelessness. The first step in the research has been to explore experiences of accessing primary care which was completed in early 2021.
Impact of COVID-19
In light of the pandemic this work has been adapted to explore the impact of changes (including organisational and technology changes) made during the pandemic in primary care sites providing specialist homeless healthcare services.
This work is particularly important because there have been rapid changes in how patients are seen in general practice and an increase in remote consultations. This can cause difficulties for people experiencing homelessness, as they may not have access to the necessary technology. In addition, there have been new ways of working between health and social care services, for example hostels and general practices.
This work is being used to co-design a guide for improving patient safety and experiences of services for those experiencing homelessness and other under-served groups.
For further information contact Kelly Howells.
4. Co-design and testing of a mobile app to enhance communication, safety and wellbeing for people living at home with cognitive impairment/early stage dementia
This project focuses on improving patient safety by enhancing communication via an app called HearMeNow (formerly MyHealthGuide). Patients and their carers were involved in the design of the research using co-design methods. It follows three cycles of evaluation with service users, their families and healthcare professionals.
Researchers are working in partnership with Maldaba (HearMeNow app developers) and a specialist home care service in England called Belong At Home.
Championing the use of digital technology is a key issue reflected in policy and practice and this study supports people with cognitive impairment/dementia to use technology to live safely in their own homes. Working closely with patients and their carers allows them to express the benefits and challenges of technology. This may shape the future development of apps that potentially enhance safety for people with cognitive impairment/dementia through improved communication.
Impact of COVID-19 on the intervention
The start of the research was delayed due to the pandemic. Researchers conducted an engagement project called ‘Living with dementia during COVID-19’ to consider whether it’s possible to use remote methods of communication to conduct this research.
As a result, a video telling the stories of people living in the community with early onset dementia and their carers was created. The video and written stories highlight experiences of the first UK lockdown for people living with dementia in the community, their families and carers. The work also shows how technology could play a part in improving their safety.
For further information contact Sudeh Cheraghi-Sohi.
5. Co-designing a digital/online resource (intervention) for pharmacists to help people with vision impairment manage their medicines
It is known that visually impaired (VI) people are marginalised in terms of both gaining access to healthcare and being more likely to experience patient safety issues than the general population, particularly those related to their medication.
There are a number reasons why VI people are more at risk of medication errors, such as:
- Being unable to open medication containers
- Being unable to tell the difference between various types of medication containers
- Being unable to tell the difference between various types of tablets/capsule dosage forms
- Forgetting to take medication on time
- Taking the wrong medication.
Digital technology is increasingly used to improve people’s safety and quality of life and VI people are frequent users of the internet to support their wellbeing. It is less clear how digital technologies, managed by individuals, can empower VI people, and also how it can safeguard them from harm related to managing their medication.
This study aims to co-design, with people living with visual impairment and pharmacists, a digital/online resource that pharmacists can use to help VI people manage their medicines.
For further information contact Sally Giles.
6. Exploring the experiences of sharing patients' health data
This project aims to hear from marginalised, disadvantaged and seldom-heard communities about their views on sharing and using personal health information (also known as health data), that is used for two purposes:
- to share information across health and social care organisations to improve communication and safety of care
- for health and care research purposes, such as doing research to address inequalities in health and care
While most patients support the use of their health data where they cannot be identified, there have been concerns about the security, privacy, and control associated with access and the use of Electronic Patient Records (EPRs). This research, a joint project between the NIHR GM PSTRC and NIHR ARC-GM, aims to explore what people from specific communities think, and in particular people whose voices aren’t often heard in public forums.
During the COVID-19 pandemic there was an overnight transformation in the need to share data more widely, to allow the best possible treatment and personalised care for people with COVID-19, but also for new research to be done rapidly using health data. Now feels like the appropriate time for us to learn lessons that will support ongoing work around data sharing, while also addressing any barriers and concerns.
For further information, contact Caroline Sanders.
- Dr Sudeh Cheraghi-Sohi
- Dr Kelly Howells
- Dr Rebecca Morris
- Dr Isabel Adeyemi (Patient and Public Involvement)
- Professor Sue Kirk
- Professor Pauline Ong
- Dr Waquas Waheed
GM PSTRC PhD Fellow
- Anna-Sophia Wawera