A qualitative study of the health experience of gypsy travellers in the UK with a focus on terminal illness

Abstract

Aim To understand the experience of terminal care and health care access for Gypsy Travellers, to inform palliative and primary care service provision. Background Little contemporary research of UK English Romany Gypsy Travellers is available. This ethnic group is often overlooked in ethnic minority health research. Methods Access to Gypsy Traveller communities was through non-health care channels and required the development of trust through repeated contact over time. English Romany Gypsy Travellers at two Traveller sites participated in face-to-face contacts. Data collection was through field observation and seven semistructured interviews with Gypsy Traveller women who had experience of caring for relatives who were dying. In addition, data were collected over two years through discussion in a members-only Gypsy and Traveller interest e-mail forum. Findings The culture of Gypsy Travellers is distinct but diverse. Hygiene is important as is discretion and sensitivity to the information requirements of the patient and family. Gypsy Travellers are aware that their mobility (voluntary or enforced) can negatively impact on health care. Home care for the terminally ill is often preferred to hospital care often due to poor understanding of their cultural and personal needs by health care professionals and due to an aversion to ‘bricks and mortar’. Care may be provided by the extended family. Palliative care provision should consider the needs of Gypsy Travellers including respect for their culture and support for caring at home