A qualitative study exploring the experiences and perceptions of informal carers of people with dementia when interacting with health care services was published this month in the journal Dementia. The study entitled ‘Caregivers’ interactions with health care services – Mediator of stress or added strain? Experiences and perceptions of informal caregivers of people with dementia – A qualitative study’ was undertaken by Despina Laparidou (lead author), Dr Jo Middlemass, Professor Terence Karran and Prof Niro Siriwardena.
The study explored carers’ unmet needs for both information/knowledge about dementia and support from healthcare services. The researchers found that carers would greatly benefit from detailed information on disease progression, guidelines and tips on dealing with challenging behaviours, as well as information on financial and legal advice. Carers also felt that health and social care services are often fragmented, making it harder for them to receive the support they need and want.
At the same time, healthcare professionals stated that while they have a theoretical knowledge of the disease, they felt they often lack knowledge of how it is to live with dementia, which can make it difficult to know how best to support carers. Another interesting finding of the study was that having carers keep a daily diary of symptoms and behaviour could help to empower carers and facilitate communications with healthcare professionals.
The research team hopes to expand this study and develop an educational intervention for informal carers of people with dementia.
By Despina Laparidou
Researchers from CaHRU with colleagues from the School of Health and Related Research (ScHARR) at the University of Sheffield have published a new study: “Reassurance as a key outcome valued by emergency ambulance service users: a qualitative interview study” in the journal Health Expectations. The study’s lead author was Fiona Togher, PhD student and Graduate Research Assistant in CaHRU. She was supported in the work by Alicia O’Cathain, Professor of Health Services Research at the University of Sheffield, Viet-Hai Phung, Research Assistant in CaHRU, Janette Turner, Research Fellow at the University of Sheffield and Professor Niro Siriwardena, director of CaHRU. The study is part of a five year NIHR Programme for Applied Health Research, Prehospital Outcomes for Evidence Based Evaluation (PhOEBE).
The authors aimed to investigate the aspects of emergency ambulance care that were most valued by users of the service. Fiona and Viet-Hai interviewed people (patients and carers) that had used the ambulance service for a range of different conditions such as diabetes, suspected stroke, breathing difficulties and falls. The participants had also received various types of ambulance service response i.e. ‘hear and treat’ in which the participants received enhanced clinical assessment and advice over the telephone only, ‘see and treat’ in which the participants were treated on-scene by appropriately skilled clinicians without the need for hospital admission and the more familiar, ‘see and convey’ in which the participants received pre-hospital assessment and treatment before transportation to acute care.
The authors found that regardless of their specific clinical problem people valued similar aspects of their emergency ambulance service experience. Participants had often been extremely anxious about their health, and they most valued the reassurance they felt from receiving appropriate advice, treatment and care from ambulance service staff. It was found that the ability of the emergency ambulance service to allay the high levels of fear and anxiety felt by users is crucial to the delivery of a high quality service.
The qualitative interview data collected from this research is now being re-analysed as part of Fiona’s doctoral studies to develop a Patient Reported Experience Measure (PREM) for use in UK ambulance services.