Current and Forthcoming Projects

Palliative Care, Older people and Ethnicity – PALCOPE

Turning stories into issues

Palliative care services look after those with terminal and some chronic illnesses at home, hospital or at a hospice. But research has shown that more needs to be done in order for these care services to meet the needs of people from a wide range of ethnic minority groups.

The Department of Health-funded PRIAE’s PALCOPE project aims to increase awareness of palliative care among older people from different ethnic and cultural backgrounds. It also works towards informing professionals in this care sector about the varying and complex needs of BME elders. To achieve this, the initiative listened to the experiences of both older people and those working in palliative care to develop innovative materials and resources that would be simultaneously service-user focussed and worker-friendly.

A resource from the project is a booklet for service users based on personal stories from patients and professionals. A new information leaflet for elders, family carers and health and social care professionals is also available; and soon to be released publication for professionals on understanding better palliative care needs of BME elders published by National Hospice Council; and a detailed working guide from PRIAE – see Publications and Downloadable Reports

Main findings from the PALCOPE project:

• Older people with life-limiting conditions and their carers had a low level of awareness of hospice and palliative care;
• Older people from minority ethnic backgrounds often live with multiple forms of illness and disease, can be poor, socially marginalized and have low expectations of services;
• Older people from different ethnic and cultural backgrounds can experience delays in the diagnosis of a life-threatening illness because their symptoms are not recognised or are mis-diagnosed on presentation;
• Serious illness, death and dying can increase the salience of identities of ethnicity, gender and faith and intensify experiences and feelings of social exclusion for older people;
• The attention given to cultural difference by professionals can sometimes compromise holistic needs assessment and care, leading to the partial and inaccurate assessment of needs;
• In addition to the difficulties that minority ethnic older people can face in living with a life-limiting illness, the PALCOPE project found positive examples of how older people have negotiated their ill-health and changing inter-personal and social circumstances;
• There can be practical and ethical conflicts between what some professionals regard as ‘culturally sensitive’ care and practices of age oppression that diminish older people’s autonomy and role in decision making;
• There are no standardised practices for the use of trained interpreters within hospice and palliative care services and the lack of out-of-hours access to interpreters can impede responsive care.

PALCOPE Flyer - (241kb Adobe Acrobat PDF)
PALCOPE Leaflet - (874kb Adobe Acrobat PDF)

For more detail on the above and further information on PALCOPE, please contact Yasmin Gunaratnam at yasmin.gunaratnam@btopenworld.com; sunjeeda.hanif@priae.org Tel : 0113 285 5990