Users' and carers' experiences in long term neurological conditions

Developing a neurological condition can have a profound impact on every aspect of life, not only for the individuals affected, but also for their family carers. Without adequate support, the well-being and quality of life of carers can diminish and family relationships can break down, resulting in morbidity, distress and increased costs to health and social services.

The National Service Framework (NSF) for Long Term Neurological Conditions (LTNCs) was set up with the aim of transforming the way health and social care services support people with these conditions and their carers.  To inform service development for this group, we are engaged in an on-going programme of research funded by the Department of Health under the Research Initiative for LTNCs  www.ltnc.org.uk.  This work aims to understand the experiences and support needs of carers of working aged adults with a range of LTNCs including:

 

Sudden onset conditions

Head injuries

Strokes

Brain infections

 

Progressive conditions

Multiple sclerosis

Motor neurone disease

Huntington’s disease

Parkinson’s disease

 

Stable/intermittent conditions

Epilepsy

 

To date our programme of quantitative and qualitative research led by Dr. Diana Jackson comprises two completed mixed methods studies using postal questionnaires with follow-up telephone interviews, and one on-going postal/web-based survey that is due to complete at the end of 2010.  We have carried out: 

 

• Systematic reviews of users’ and carers’ experiences undertaken in collaboration with the Social Policy Research Unit (SPRU) York. 

 

• A survey of carer experiences (N=222) in acquired brain injury (ABI) undertaken in a collaborative bid with the Health Services Research group in the Institute of Psychiatry (IOP) at KCL.  To inform differential service planning, comparisons were made with carers of people with dementia studied previously by IOP researchers.  Different behavioural problems of those cared for were the strongest predictors of poor carer well-being, with aggressive problems affecting ABI carers the most and passivity/low mood affecting dementia carers the most.

 

• Support for carers with multiple caring roles (MCRs).  The ABI study drew attention to the needs of carers who care for other family dependents (children or older relatives) as well an adult with ABI; that is they have multiple caring roles (MCRs).  In a follow-up survey, MCR carers were compared with ‘lone’ carers.  The sample (N=282) covered carers of adults of working age with a range of progressive, sudden onset and stable/intermittent LTNCs, including some rare ones (motor neurone disease, Huntington’s disease and encephalitis).   

 

• Replacement care for people with LTNCs.  Both the previous studies revealed replacement/respite/care to be a prominent unmet need.  A third of LTNC carers had stopped or reduced paid employment to take on a caring role because the prohibitive cost of paying for replacement care while they were at work made it uneconomic to continue.  Moreover, many wanted access to high quality respite care services so they could take part in educational or leisure activities outside the home.  This on-going study into replacement/respite care services will determine how they can best be planned and delivered to meet carers’ needs.