Justin Wood
The Institute for Health Research (IHR) at Lancaster University, in conjunction with the national charity Help the Hospices, have been awarded a 2005 ESRC Collaborative (CASE) Studentship. This Doctoral award has been funded for a study examining ‘equity of geographic access to hospice and palliative care within the United Kingdom’.
Research Topic
The right to ‘a good death’, and choice over where to die, are increasingly prominent themes in government policy. Palliative care can benefit and improve the lives of terminally ill patients during the later stages of life, as well as in supporting patients’ carers. Yet, as the July 2004 House of Commons Health Committee Fourth Report of Session on Palliative Care highlights, a wide range of inequities exist in the current provision of palliative care services: by geographical area, age group, disease group, ethnicity and complexity of needs.
The project aims to examine geographic variations in the provision of hospice and other palliative care provision across England, Wales, Northern Ireland and Scotland, using a range of methodologies.
Core research questions include:
- Do inequities exist in the provision of hospice & palliative care at the national, regional & local level?
- Are such inequities in access geographically patterned?
- How might these patterns be explained?
- What policy implications might emerge from such findings?
Additional research questions will examine:
- Are there differences in how palliative care services are provided and accessed within urban, rural and remote rural populations across the UK?
- Why do some adjacent urban neighbourhoods present highly different rates of referral for care, or experience differing levels of home death?
- Do access issues influence the provision of palliative care for different patient groups (child and adult, older people, complex needs, minority groups, disease type)?
- Are the ‘needs’ and preferences of adult palliative care patients and their carers (disease stage, symptom burden, psycho-social and spiritual) being adequately met by differing levels of access to ‘core service components’?
The research project will make a significant contribution to current debates about equity of hospice provision within the United Kingdom, as well as issues regarding choice and access to alternative types of palliative care at the end of life. It will contribute to the literature on health inequalities. In addition, research will provide the first national map of access to adult inpatient bed hospice care, and will offer opportunities to look in depth at issues within local level ‘hotspots’.
Research Methods
The study will involve two phases and a mixed methodology. First, a systematic review of access research, and separately, spatial analysis/mapping using geographical information systems (GIS). Secondly, in-depth interviews with palliative care specialists and leads in four localities nationally, as well as a postal questionnaire to all UK hospices.
Phase one will employ spatial analysis techniques and a distance decay formula to map variations in geographic access to inpatient adult hospice provision across England, as well as potentially the UK.
Phase two will then focus on areas where the following conditions have been identified from initial analyses:
- High population demand and poor supply of hospice services.
- High demand & poor supply of services, coupled with high deprivation levels.
- Adjacent neighbourhoods which have very different rates of home death.
- More remote rural areas with poor or non-existent access to local hospice services.
Where local level geographic ‘hotspots’ are identified, which demonstrate gross mismatches between service demand and supply, i nvestigations will be undertaken with a range of general and specialist palliative care professionals and teams to investigate how social and personal circumstances (such as location, deprivation, disease type) shape access to hospice and palliative care services. It is proposed to undertake approximately 32 in-depth interviews in four chosen localities, with a mix of palliative care and hospice professionals (for example, palliative care consultants, specialist nurses, and GPs with a palliative care interest), cancer network policy leads, and local community leaders with strong hospice care links. A pproval for interviews will be sought from the Lancaster University Institute for Health Research Ethics Committee, and North West Multi-centre Research Ethics Committee (MREC). Qualitative findings will then be used to inform a postal survey of all 253 UK hospices, as well as potentially cancer networks, with a focus on access issues within diverse urban and rural areas and neighbouring urban localities, and where different care models may be employed.
Research partners
The ESRC CASE studentship is based within the Institute for Health Research (IHR) at Lancaster University. IHR has a vibrant research community comprising a 50 strong group of social scientists from sociology, social policy, geography, public health, psychology and history, working across a variety of programmes, including: supportive and end of life care; mental health; learning disabilities; public health; and rural health. See: http://www.lancs.ac.uk/fss/ihr/
David Clark (Professor of Medical Sociology and Director of the International Observatory on End of Life Care and Institute for Health Research at Lancaster) and Tony Gatrell (Faculty Dean and Professor of the Geography of Health) will jointly supervise the studentship, with Professor Clark taking the lead. Staff web pages are at http://www.lancs.ac.uk/fss/ihr/staff.htm. A virtual advisory or steering group will be developed as the project progresses.
Doctoral student and dissemination of project findings
Justin Wood has been awarded the studentship. IHR doctoral student web pages are available via: http://www.lancs.ac.uk/fss/ihr/courses/doctorate/currentresearchstudents.htm
For further information on the project, please contact Justin Wood, e-mail j.wood3@lancaster.ac.uk.
