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Patient safety and children with long-term health conditions

4 Sep

by Sue Kirk, Professor of Family and Child Health

Juvenile diabetes patient with his mother

Increasing numbers of children and young people are living with a long-term health condition such as diabetes or asthma. Over the past 20 years we have also seen more children with complex healthcare needs being cared for in their own home rather than in hospital.  These changes have led to parents (and the children themselves) taking on roles and responsibilities that would have been unthinkable in the past. This includes monitoring their individual health, managing their own medication and treatment, using complex medical equipment such as ventilators, acting as care coordinators, and in some cases organising and managing home care teams.

Parents and young people don’t only manage these health conditions within the relatively controlled environment of the home. Children and young people go to school and college, take part in social activities with their peers and families, go on holiday and may spend time in hospices and other care settings. They may also receive services from a vast array of health, social care and voluntary sector organisations. This presents challenges for communication, both between professionals and between families and professionals, and consequently for care integration. This is worsened as young people transfer to adult services.

Surprisingly there has been little research that has examined patient safety for this marginalised group. We don’t know how families or health care professionals understand, monitor and manage safety in this complex situation or how safety could be promoted and improved.  This is what we intend to look at as part of the Safety in Marginalised Groups: Patients and Carers theme of the Greater Manchester PSTRC.

Placing ALL patients and carers at the heart of patient safety research: introducing our new theme on marginalised groups

23 Aug

by Caroline Sanders, Research Lead in Safety in Marginalised Groups: Patients and Carers

Inclusion_raised-hands_small_AdobeStock_69187814

In his 2013 review for improving patient safety, Don Berwick emphasised the importance of seeking out the voice of patients and carers, and ensuring they are ‘present, powerful and involved’ at all levels. This has been a major focus of our earlier research, our involvement and engagement work, and led to our priority setting partnership in conjunction with the James Lind Alliance in March 2017. This identified the number 1 question for future research is to understand ‘How can patient safety be assured for the most vulnerable in society?’. This recognises the widespread concerns and evidence showing that patients and carers who are already disadvantaged and marginalised, may also be at greater risk of harm within the healthcare system.  Additionally, we have not yet done enough to ensure we hear the voices and understand the experiences of marginalised groups to be able to develop appropriate and effective interventions to support patient safety for ALL patients and carers.

Our starting point for the new research that will evolve along with our further Patient and Public Involvement (PPI) work, is to acknowledge that people may be disadvantaged and marginalised by multiple factors such age, disability, ethnicity, sexuality, gender, and socio-economic disadvantage.  For example, we know that BME groups have poorer health outcomes, and poorer access and experiences of healthcare services. People may also be marginalised because of stigma and poor access to services for specific conditions (e.g. mental health problems); or they may be marginalised because of the circumstances or settings in which they live (e.g. living alone, caring for someone at home, living in a rural setting, in a care home or prison, being homeless).

In this theme, we will be working closely with other themes and our PPI contributors to focus on and understand safety risks and concerns for specific population and patient groups. For example, what are the particular challenges in relation to communication, which we know is considered by patients and carers to be a crucial foundation for safe care? What are the challenges for marginalised groups of patients in the ever-changing care context, where there are new responsibilities and health care practices expected as a part of enabling better self-management? We will co-design or adapt tools to support patient safety that will be tailored for such groups.  This may include use of mobile apps or other technologies, and we will also focus on the help and support that people might need to make sure they can use these, or enable appropriate alternatives. We know this means we need to be creative in reaching out to communities and groups who currently feel disempowered or hidden in relation to healthcare research and service provision. We are looking forward to this exciting opportunity to seek out some of the quietest and most hidden voices to ensure the most vulnerable can have better and safer care.

Please see our webpage or contact us for further information or to share any comments and suggestions.