people with life limiting conditions prefer to receive the care and support they
need in their own home and the main source of this care typically comes from within
Taking on the role of family
caregiver for someone with a terminal illness or chronic condition can be a
challenging and distressing experience.
While some people derive satisfaction from caregiving in difficult
circumstances, others report high levels of burden, with fatigue, worry,
stress, loss and social isolation being contributing factors.
Key work streams in the Cicely
Saunders Institute aim to increase understanding of caregivers’ experiences and
support needs, and to facilitate the contribution they can make to research
through involvement in planning studies that address issues of importance to
them and those they care for.
A series of studies, commissioned
by the Department of Health, has explored the experiences and needs of family
caregivers. These studies have made an important contribution
to our understanding of the costs of formal and informal care, caregivers’ unmet
support needs and ways of meeting them (www.ltnc.org.uk).
- Postal surveys have been used to research these
issues in diverse long term neurological conditions (LTNCs), including
deteriorating diseases (multiple sclerosis, Huntington’s disease, motor neurone
disease, Parkinson’s disease) and other seriously disabling conditions (head
injury, stroke, brain infections, hypoxia, epilepsy, brain tumours).
- The experiences of caregivers from ‘hard to
reach’ Black and Minority Ethnic groups have also been explored, particularly
with regard to their religious and culturally specific support needs when
caring for people with LTNCs.
the impact of caregiving
and refining measures to evaluate the impact of caregiving as an outcome in
advanced disease underpins a significant part of our research:
22-item Zarit Burden Interview (ZBI) is a measure of caregiver burden. We have examined its dimensionality and compared
the psychometric properties of six short forms across several diagnostic groups,
finding strong validity and internal consistency for each of them.
- The ArmA is a newly validated outcome measure, which
was designed to evaluate the effectiveness of interventions for spasticity by
showing whether people with severe
upper limb spasticity and their caregivers could carry out everyday care tasks, such as
washing and dressing, with greater ease following the intervention.
to improve caregiving experiences
design of interventions that aim to improve communication with caregivers in
palliative care settings has been prioritised in two recent hospital-based
studies. Both have used caregivers in
distressing symptoms can improve quality of life for patients with end-stage
lung disease (ESLD) and their families. By
means of in-depth interviews, caregivers have informed essential improvements
to the communication and planning of
care for their relatives with ESLD. Future work to evaluate a new Hospital to Home case conference
intervention will also involve caregivers.
a collaborative project between King’s College Hospital and King’s College
London, interviews with relatives of patients on ICU and focus groups with
staff have informed the development and evaluation of the King’s Psychosocial
Assessment and Communication Evaluation (KPACE). This intervention centralises documentation of
the psychosocial needs and preferences of patient and families. It prompts communication and bereavement care,
and raises awareness of caregivers’ needs in ICU staff.
the quality of care and services at the end of life
A series of studies have used in-depth interviews
with bereaved caregivers and/or survey methodologies to examine retrospectively
the quality of care and services at the end of life:
- A population-based survey of care (QUALYCARE) was
completed by bereaved relatives of cancer patients in London. Changes in relatives’ preferences for place
of death revealed that most shared the patient’s preferences. Findings have informed the Government’s End of
Life Care Strategy and local care provision through health care commissioners
part of project BuildCARE, in an international initiative spanning the UK and
USA, services and care in the months before death from cancer were examined in the
IARE study. Caregivers completed postal
questionnaires, which helped to determine whether the needs and preferences of
their dying relatives had been met, and they identified the impact of death on
OPTCARE study is surveying 900 bereaved relatives to find out how health
services could be better provided to support people aged over 75 and their caregivers
at the end of life. The next phase of
this work will evaluate a new palliative care service, incorporating elements
recommended by relatives and caregivers, to determine whether it improves
well-being and caregiver burden.
- The DINAMO project aims
to develop the evidence needed to
optimise home palliative care in Portugal. Among the work packages, the preferences of
terminally ill patients and families are being elicited.
- The QoL
LIVER, a longitudinal mixed-methods study into end-of-life care needs for
people in Southern England living with advanced liver disease, and their family
caregivers, is also currently underway.
involvement in research
and public participation are central to our research from the initial stages of
planning through to dissemination. Those
affected by illness, bereaved families and patient and caregiver led
organisations and charities all support research development. This helps to
ensure our questions, methods, results and reporting meet the needs of those
who are affected by the conditions and problems we aim to alleviate:
- To inform best practice in developing and
evaluating interventions in palliative and end of life care, the MORECare
project used Medical Research Council guidance on evaluating complex
interventions. Caregivers assisted in
the design of the study and its ethical aspects, supporting consultations and
stakeholder workshops to identify best methods to research end-of-life
- In several other studies, input
from service users has included developing the content of questionnaires and
ensuring their relevance to caregivers themselves, devising creative methods to
facilitate participant recruitment, appraising the implications of the research
in relation to improving health services for the groups involved and critically
reviewing and adding content to final reports.
- Jackson D, McCrone P, Turner-Stokes L. Costs of caring
for adults with long-term neurological conditions. Journal of Rehabilitation Medicine 2013 2013; 45:653-661.
- Ashford S, Turner-Stokes L, Siegert R, Slade
M. Initial psychometric evaluation of the Arm Activity Measure (ArmA): a
measure of activity in the hemiparetic arm. Clinical
Rehabilitation 2013; 27(8): 728-740.
- Ashford S, Slade M and
Turner-Stokes L. Conceptualisation and development of the Arm Activity measure
(ArmA) for assessment of activity in the hemiparetic arm. Disability and
Rehabilitation 2013; 35(18): 1513-8.
- Higginson IJ, Gao W, Jackson D, Murray J,
Harding R. Short-form Zarit Caregiver Burden Interviews were valid in advanced
of Clinical Epidemiology 2010; 63: 535-542.
- Siegert RJ, Jackson, D, Tennant A, Turner-Stokes L. Factor analysis and Rasch analysis of the
Zarit Burden Interview for acquired brain injury carer research. Journal of Rehabilitation Medicine 2010 42(4):302-9.