Gypsy, Traveller and Roma experiences, views and needs in palliative and end of life care: a systematic literature review and narrative synthesis

Abstract

BackgroundGypsy, Traveller and Roma communities are known to experience health inequalities. There has been little focus on palliative care in these communities despite the well-recognised inequalities of access to palliative care in other minority ethnic groups.MethodsSystematic review and thematic analysis of the current evidence concerning palliative care experiences, views and needs of Gypsy, Traveller and Roma communities. Medline, Embase, Emcare, CINAHL, PsycINFO, Web of Science, Scopus, AMED, Global Health, Psychological and Behavioural Sciences Collection and BNI were searched up to November 2020, alongside author and citation searching. NHS England, Hospice UK, National Audit Office and OpenGrey were searched as grey literature sources. Gough’s ‘Weight of Evidence’ framework was used for quality appraisal.ResultsThirteen papers from eight studies were included in the synthesis. Although there was variation between communities, three overarching and inter-related themes were identified. (1) Strong family and community values include a preference for healthcare to be provided from within the community, duty to demonstrate respect by attending the bedside and illness as a community problem with decision-making extending beyond the patient. (2) Distinct health beliefs regarding superstitions around illness, personal care, death rituals and bereavement. (3) Practical barriers to non-community healthcare provision include communication difficulties, limited awareness of and access to services, tensions between patients and healthcare professionals and lack of training in delivering culturally appropriate care.ConclusionA wide range of factors influence Gypsy, Traveller and Roma community access to palliative care. Community diversity requires sensitive and highly individualised approaches to patient care.PROSPERO registration number42019147905.

Changes in the Prevalence of Metabolic Syndrome, Its Components, and Relevant Preventive Medication between 2011 and 2018 in the Northeast Hungarian Roma Population

“…The Roma population’s socioeconomic status is generally low [ 4 ]; they suffer from and are challenged by unhealthy lifestyles [ 5 , 6 , 7 ], low education, and high unemployment rates [ 8 ]. In addition, their access to the healthcare system is often very limited [ 9 , 10 ].…”

Public perceptions of advance care planning (ACP) from an international perspective: a scoping review

“…Many studies confirmed persistent lack of knowledge, low awareness and ongoing confusion around ACP [40][41][42][43]. This included poor understanding about what ACP means, its purpose, components and processes that was compounded by limited knowledge of people's underlying health conditions and wider health literacy problems [23][24][25]31]. A perceived lack of access to suitable information was noted as a major contributing factor to low uptake in studies among many groups of people [23,25,33,34].…”

“…[27]. Some studies highlighted previous negative healthcare experiences among participants as a driving force behind ACP avoidance, particularly with vulnerable groups and marginalised communities [24,34]. For instance, Jerwood et alrecorded rich patient data from those with severe mental illnesses and a terminal illness; 'Participants' accounts were compounded by earlier experiences of prejudice and stigmatization when trying to access healthcare services' .…”

Traveller end of life care experiences and needs: thematic analysis

“…Several findings from our study are consistent with existing research on end of life care in Travelling communities, including the role of family at the end of life, death rituals, conflicts with staff due to large numbers of family at the bedside and the need for same-gendered healthcare staff. (3,11) The need for same-gender healthcare has been reported in other communities. For example, some members of the Jewish community refrain from touching anyone of the opposite sex unless they are 39) However, delivering cultural competency training to all healthcare staff for all cultural groups is time-consuming and can be reductionist, failing to acknowledge the wide range of needs between individuals and between different communities.…”

“…(10) There is limited published evidence exploring the palliative and end of life care experiences and needs of Travelling communities; a 2021 systematic review of international studies identified a paucity of high-quality research. (11) The review found a need for large numbers of family to attend the bedside of a dying relative. (12)(13)(14) Decision-making extended beyond the individual, with multiple family members requesting personal updates from the medical team, (15) and some relatives wished to withhold diagnoses from patients.…”