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Most 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 the family. 

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.

Experiences of caregiving

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 ( 

  •  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.

Measuring the impact of caregiving

Developing and refining measures to evaluate the impact of caregiving as an outcome in advanced disease underpins a significant part of our research:

  • The 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. 

Interventions to improve caregiving experiences

The 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 their development: 

  • Managing 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.
  • In 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.

Examining 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 and services.
  • As 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 themselves.
  • The 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.

Caregiver involvement in research 

Patient 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 care. 
  • 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 conditions.  Journal 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.
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