Care Homes Project v1

• Research type

  Research Study

• Full title

  Understanding the experience of people with Parkinson’s in institutional care and understanding the care needs of people with Parkinson’s

• IRAS ID

  154810

• Contact name

  Annette Hand

• Contact email

  annette.hand@nhct.nhs.uk

• Sponsor organisation

  Northumbria Healthcare NHS Foundation Trust

• Research summary

  Many people with Parkinson's will require care from either informal carers (e.g. wife/husband/family) or formal carers within their own home as their condition progresses. Carers can find themselves taking on increasing physical, economic and emotional support over time, which in turn can results in reduced quality of life for the carer and increased carer burden. At some stage it may not be possible to maintain the person with Parkinson’s at home and a move to institutional care, either a residential or nursing home, is required. Studies have shown that Parkinson’s is one of the leading causes of institutionalisation, along with stroke and dementia. There has been little published research of the profile and experiences of people with Parkinson’s who live in care homes, particularly from the UK, but those in care were older, had later stage disease, poorer mental health and poorer outcomes.
  We plan to undertake a prospective study to identify the ‘triggers’ to care home placement, and in particular look at the role of carer stress and carer burden in this process. By understanding specific triggers we may help delay or prevent care home admission or support those going into care in a more timely manner. We plan to carry out a descriptive study, for those people with Parkinson’s in institutional care, by assessing their care needs, quality of life, as well as factors influencing admission to care home and where patients were admitted from. We will conduct interviews with patients, and carers (family) to gain an understanding of the major problems facing people with Parkinson’s living in care homes. We will also survey four other Parkinson’s Specialist Services, Parkinson’s UK Information Staff and Parkinson’s Nurse Specialist to gain a greater understanding on how best to support people with Parkinson’s in institutional care.

• REC name

  North East - Newcastle & North Tyneside 1 Research Ethics Committee

• REC reference

  14/NE/1093

• Date of REC Opinion

  9 Oct 2014

• REC opinion

  Further Information Favourable Opinion