Research participation in palliative medicine-benefits and barriers for patients and families: rapid review and thematic synthesis.

BACKGROUND: Research is essential for gathering evidence to inform best practice and clinical decision making, for developing and testing new treatments and services in palliative and end-of-life care (PEoLC). The participation of patients, carers and family members is essential, however, personal and ethical concerns are often cited by professionals as barriers to recruitment. There is evidence that patients and family members can benefit from participation in PEoLC research. AIM: To synthesise the evidence regarding patients', family members' and carers' experiences of participating in PEoLC research. To identify recommendations for enhancing the experience of participants. DESIGN: A qualitative rapid review and thematic synthesis. DATA SOURCES: MEDLINE, PsycINFO and PubMed were searched from 2010 to 2020. Studies reporting patients', family members' or carers' experiences of participating in PEoLC research were included. RESULTS: 4 studies were included and 7 themes identified relating to the benefits of, and barriers to, participation in PEoLC research. Both altruistic and personal benefits of participation were reported. Barriers (negative aspects) to participation included feeling overwhelmed, practical issues, reminders of being a patient, not seeing the research as relevant to them and unmet needs. CONCLUSIONS: A number of benefits (positive aspects) surround participation in PEoLC research. However, several barriers (negative aspects) can prevent or discourage participation. This review has identified recommendations for research teams to enhance the experience, and number of people who those participating in research in this field.

A qualitative evaluation of the impact of a training programme on colorectal cancer risk reduction for Specialist Screening Practitioners on health promotion, knowledge and practice.

OBJECTIVE: Colorectal cancer (CRC) is the fourth most common cancer in the UK. It is estimated that around 50% of the disease burden is caused by lifestyle factors. This paper evaluates the impact of a training programme for Specialist Screening Practitioners (SSPs) on knowledge of CRC risk reduction and subsequent health promotion activities. METHOD: Attendees (n = 21) were invited to participate in semi-structured qualitative telephone interviews developed in conjunction with programme organisers. An independent researcher undertook the interviews on the perceived impact of the training on knowledge about risk reduction, communicating health promotion messages and working practices. RESULTS: Ten interviews were conducted. The programme was perceived to be successful in increasing knowledge about CRC risk and methods to promote behavioural change. Participants questioned the suitability of the endoscopy setting to communicate health promotion messages given patient anxiety pre-investigation and post-investigation elation after negative results. Key barriers to health promotion activities were time, hesitancy over raising issues that could not be easily discussed and scepticism about the ability of older adults to change their lifestyle. CONCLUSIONS: Training on CRC risk reduction increased knowledge and behaviour change skills among SSPs. Further work is needed to explore opportunities to optimise the screening environment for health promotion activities.