title: Piloting a new approach in primary care to identify, assess and support carers of people with terminal illnesses: a feasibility study.
abstract: BACKGROUND
  General practices in the United Kingdom are encouraged to have a protocol for the identification of carers and a mechanism for social care referral. However, a minority of carers are identified and those caring for someone with a terminal illness often cope until the situation becomes overwhelming. Earlier identification could enable more timely support. The aim of this project was to model and pilot a systematic approach to identify, assess and support carers of people with supportive and palliative care needs in primary care.
  
  
  METHODS
  The intervention was modelled on the Medical Research Council complex intervention framework with a preliminary theoretical phase, which has been reported elsewhere. In this study, which lasted 12 months, four general practices were recruited. Each practice identified a 'carer liaison' person to take the lead in identifying carers, followed by assessment and support using a toolkit modelled from the earlier phase. Qualitative evaluation interviews were conducted with carers who had received the intervention and the carer liaisons and general practitioners in the pilot practices. A stakeholder event was held to disseminate and deliberate the findings.
  
  
  RESULTS
  The practices' populations ranged from 5840 to 10832 patients and across the four practices, 83 carers were identified. Thirty six carers were identified from practice registers (disease - 16; palliative care - 9; carer - 11; advanced care plan - 12), whilst 28 were identified opportunistically by practice staff at appointments or at home. Seven carers self-identified. Overall, 81 carers received the carer pack and 25 returned the Carer Support Needs Assessment Tool (CSNAT) form. Eleven carers received a follow up call from the practice to discuss support and 12 were also referred/signposted for support. Qualitative interviews suggest carers valued connection with their practices but the paperwork in the toolkit was onerous.
  
  
  CONCLUSIONS
  This approach to identifying and supporting carers was acceptable, but success was dependent on engagement within the whole practice. Carers did not tend to self-identify, nor ask for help. Practices need to proactively identify carers using existing opportunities, resources and computer systems, and also adopt a public health approach to raise carer awareness and perceived support within their communities.
authors: Marie Curie Hospice, Balornock Rd, Glasgow, G33 3US, UK. Emma.Carduff@mariecurie.org.uk.
authors: Emma
authors: E
authors: Carduff
authors: NHS Lothian, Waverley Gate, 2-4 Waterloo Place, Edinburgh, EH1 3EG, UK. Alison.Jarvis@nhslothian.scot.nhs.uk.
authors: Alison
authors: A
authors: Jarvis
authors: NHS Lothian, New Royal Infirmary Edinburgh, 51 Little France Crescent, Edinburgh, EH16 4SA, UK. Gill.Highet@nhslothian.scot.nhs.uk.
authors: Gill
authors: G
authors: Highet
authors: Marie Curie Hospice Edinburgh, Frogston Road West, Edinburgh, EH10 7DR, UK. Anne.Finucane@mariecurie.org.uk.
authors: Anne
authors: A
authors: Finucane
authors: Primary Palliative Care Research Group, Centre for Population Health Sciences, The Usher Institute, The University of Edinburgh, Medical School, Teviot Place, Edinburgh, EH8 9AG, UK. Marilyn.Kendall@ed.ac.uk.
authors: Marilyn
authors: M
authors: Kendall
authors: Primary Palliative Care Research Group, Centre for Population Health Sciences, The Usher Institute, The University of Edinburgh, Medical School, Teviot Place, Edinburgh, EH8 9AG, UK. nharrison12@btinternet.com.
authors: Nadine
authors: N
authors: Harrison
authors: Voice of Carers Across Lothian, 8-13 Johnston Terrace, Edinburgh, Midlothian, EH1 2PW, UK. JGreenacre@vocal.org.uk.
authors: Jane
authors: J
authors: Greenacre
authors: Primary Palliative Care Research Group, Centre for Population Health Sciences, The Usher Institute, The University of Edinburgh, Medical School, Teviot Place, Edinburgh, EH8 9AG, UK. Scott.Murray@ed.ac.uk.
authors: Scott A
authors: SA
authors: Murray
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers; D003704:Dementia / Q000451:nursing*; D005240:Feasibility Studies; D005260:Female; D006801:Humans; D008171:Lung Diseases / Q000451:nursing*; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009369:Neoplasms / Q000451:nursing*; D010865:Pilot Projects; D011320:Primary Health Care / Q000379:methods*; D012017:Referral and Consultation; D012944:Social Support; D013727:Terminal Care; D006113:United Kingdom