A community approach to engaging Gypsy and Travellers’ in cancer services

Abstract

While cancer outcomes in the UK have improved, inequalities remain with poorer and some ethnic minority populations experiencing lower survival rates. Research has addressed Gypsies’ and Travellers’ cancer-related beliefs, experiences and practices as part of wider studies but this is the first study in the UK to specifically focus on cancer. Findings suggest that health beliefs and practices are shaped by historical and contemporary social processes and the marginal position of Gypsies and Travellers in the UK society can result in a preference for seeking information and support from within the community. Starting from a health assets perspective, findings indicate that the structure of social relations in Gypsy and Traveller communities could be more widely utilized in health promotion programmes. Developing and extending techniques employed by Gypsy and Traveller Non-governmental Organisations such as community-based interventions and the use of lay health advisers, could be an effective method of health promotion by raising knowledge of cancer, engaging community members in preventative programmes and encouraging earlier access to services.

Knowledge and experience of cancer prevention and screening among Gypsies, Roma and Travellers: a participatory qualitative study

“…This study suggests that health knowledge is readily available from family and friends within Gypsy/ Traveller communities, but is often considered unreliable because past generations did not engage with health services. Doctors were most highly valued as sources of advice, although as in previous studies [35,56] their language could be perceived as alienating. Common barriers to accessing information are low literacy and lack of trust [57] and in reaction to this, Gypsy/Travellers can be quick to believe that they are offered misinformation [18].…”

Cancer diagnosis, treatment and care: A qualitative study of the experiences and health service use of Roma, Gypsies and Travellers

“…In common with previous research, this study identified fear of cancer and cancer fatalism among service users (Berlin et al, 2018; Jesper et al, 2008; van Cleemput et al, 2007). As Robb et al, (2014) found in the general population, ideas about the curability/incurability of cancer could co‐exist within one individual; similarly, among Gypsy/Travellers Smith et al, (2020) noted framing of cancer in terms of death, even when this was incompatible with real‐life experiences. This study provides evidence that traditional Gypsy/Traveller beliefs, while widely known, have a decreasing impact upon individuals’ behaviour.…”

“…In a self‐reported survey, Parry et al, (2007) found low rates of cancer among Gypsy/Travellers compared with age‐sex matched comparators, but van Cleemput (2018) suggests that late presentation and/or non‐survival may contribute to this apparent low incidence. Several studies have explored UK Gypsies and Travellers’ cultural beliefs about cancer, which are characterised by secrecy, stigma, fear, stoicism and fatalism (Berlin et al, 2018; Smith et al, 2020; van Cleemput et al, 2007). To varying degrees, these beliefs are also common among other BME groups (Licqurish et al, 2017) and among the general population (Robb et al, 2014; Vrinten et al, 2017).…”

Atención al final de la vida en una comunidad gitana durante la pandemia por COVID-19. End-of-life care in a gypsy community along the COVID-19 pandemic.

“…Algunos temas de salud son considerados tabú y se han descrito sensibilidades en torno a los cuidados paliativos al final de la vida y al cáncer. El cáncer se enmarca y articula en gran medida en términos de muerte y decadencia (4) . Por ello, evitan incidir en estos temas y emplean estrategias para desvincularse de los mismos (3,4) .…”

“…Además, en esta etnia, el apoyo al enfermo se considera una responsabilidad compartida, siendo la familia un pilar fundamental (3,4) . En la etapa final de la vida, para este colectivo es imprescindible cumplir con el deseo del paciente de rodearse de sus allegados (5) .…”