Primary Care Research Network / Palliative care Not Applicable
Conditions
Interventions
The research methods follow the Medical Research Council guidance for the development and evaluation of complex interventions.
Phase 1:
Intervention development involves a post-bereavement survey to
and a stakeholder consultation with recipients of care and service providers/commissioners, on the survey findings to develop the intervention and then, an on-line/postal survey on the proposed compon
Sponsors
King's College London
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Inclusion criteria as of 07/07/2016: Phase one: 1. Older adults living with frailty using one of the participating community groups or residing in the participating care home; or 2. Carers of older adults (either informal carers e.g. family members or a carer working as a volunteer for one of the participating charitable organisation supporting older people in community settings) 3. Adults with capacity to give informed consent and communicate in English Phase two: 1. The service providers are health or social care practitioners providing community based services including: specialist palliative care, general practice, community nursing, end of life care facilitators, dementia services and social care, providing services in the locality of Sussex Community NHS Trust 2. The commissioners are leads for end of life care services and are identified from the Care Commissioning Groups in the study site 3. Voluntary sector representatives are local individuals representing local/national organisations supporting/advocating for older people, e.g. Age UK, Alzheimer Society, Brighton and Hove Older People’s Council, Carers Centre Brighton and Hove Original inclusion criteria: Individuals who registered the death of a person who died: 1. In the study site 2. In the 4-10 months prior to survey administration 3. Aged 75 years and over 4. From cancer or selected non-malignant illness common in advanced age 5. Died in a community setting (e.g. at home, care home or hospice) or hospital 6. Male or female participants
Exclusion criteria
Exclusion criteria: 1. Individual included in the National VOICES survey administered by Office for National Statistics (ONS) in 2012 2. Deaths where an informant?s address is missing 3. Deaths where an informant was an official (e.g. solicitor) or other identified person who would not be able to provide the required information
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Primary outcome as of 05/07/2016: Five key symptoms are measured using the integrated Palliative care Outcome Scale at baseline, 6 weeks and 12 weeks (primary end point). Original primary outcome: Palliative care Outcome Scale | — |
Secondary
| Measure | Time frame |
|---|---|
| Secondary outcomes as of 05/07/2016: 1. Assistance with activities of daily living is measured using the Barthel Index at baseline and 12 weeks questionnaires 2. Performance status is measured using the Australia Karnofsky Index at baseline and 12 weeks questionnaires 3. Carer burden is measured using the Zarit carer burden at baseline and 12 weeks questionnaires 4. Service use and cost is measured/calculated using the Client Service Receipt Inventory at baseline and 12 weeks questionnaires 5. Survival is measured by reviewing GP medical records for mortality Original secondary outcomes: 1. Client Service Receipt Inventory 2. EQ5D 3. QUALYCare survey 4. Texas Revised Inventory of Grief | — |
Countries
United Kingdom
Outcome results
None listed