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 illness 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, seven semi-structured interviews with Gypsy Traveller women and an e-forum discussion. The latter was members' only Gypsy and Traveller interest e-mail forum. FindingsThe 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 and 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.

Improving equity and cultural responsiveness with marginalised communities: Understanding competing worldviews

“…In contrast to the nuclear family philosophy dominant in the pejorative community, both the New Zealand Māori and Gypsy Roma Travellers communities tend to have a strong extended family culture which can include siblings, parents, grandparents as well as cousins and second cousins. Furthermore, both New Zealand Māori and Gypsy Roma Travellers communities place significant importance on family (Jesper, Griffiths, & Smith, ), being close to and staying with one's family unit. This often results in Māori and many Gypsy Roma Travellers living close to or alongside these extended family units (Wetzel, Dean, & Rogers, ).…”

“…Person-centred care that considers the holistic beliefs of people is important for establishing the trust of those belonging to marginalised communities and the delivery of quality and equitable care (Doherty & Thompson, 2014;Ross et al, 2015). KAI (knowledgeaction-integration) is a culturally responsive framework that can be (Jesper, Griffiths, & Smith, 2008), being close to and staying with one's family unit. This often results in M aori and many Gypsy Roma Travellers living close to or alongside these extended family units (Wetzel, Dean, & Rogers, 1983).…”

“Where Can a Gypsy Stop?” Rethinking Mobility in Scotland

“…Existing policy tends to ignore the importance of family within Gypsy Traveller culture. Extended family networks are crucial for emotional support during illness and sensitive treatment (Cemlyn 2000; Hawes 1997; Jesper, Griffith and Smith 2008). These “affective links” stretch across the boundaries of different NHS authorities and their loss is acutely felt by Gypsy Travellers, as one woman explains:…”

“…As a result, this may challenge the very foundations of travelling lifestyles and jeopardise their sense of independence, self‐reliance and freedom. The ensuing lack of choice of health services and enforced acceptance of doctor dependency are viewed by Gypsy Travellers as much of a concern as the limited access to health care (Jesper, Griffith and Smith 2008). Inability of Gypsy Travellers to find their place within regionalised institutional frameworks can lead to social exclusion, prejudice and restricted access to health services (Parry et al 2004).…”

“…Similarly, much of Gypsy Travellers’ mobile lifestyles involve concerns and fears about health service provision, as well as enactment of memories (historical mistrust of authority figures) and cultural beliefs (need to retain autonomy, aversion to being in contained environment; cf Jesper, Griffith and Smith 2008). Travellers place considerable value on developing trusting and continuous relationships with sympathetic health workers, who understand their concerns about health checks (particular in terms of their culturally derived need for privacy and high standards of hygiene) and potential cultural implications of illness (separation from family, perceived loss of self‐reliance).…”