Guilt, shame and the perception of being a burden among older adult with multimorbidity: a scoping review and qualitative exploration

In  a  previous  project,  we  spoke  to older  adults with  musculoskeletal pain and  mental  health problems about their priorities for research. They told us that they often felt like a burden to the health service. Feelings of guilt and shame affected how and whether they sought help when they  needed it. The proposed research will explore this  topic further, shedding light  on the potential impact of these feelings on the health of older adults, how they self-manage long-term conditions and their interactions with those involved in their care Two complementary pieces of research will be conducted:

1.A scoping review of the literature to find out what is already known

2.A series of focus groups using ‘creative methods’ to explore people’s experiences of these feelings and their impact on their health and healthcare.

A scoping review will allow us to map and categorise existing research on the topic. We will search  widely  for  all  available relevant research and  highlight  what  is currently  known  about older adults’ experiences/feelings of guilt or shame of being a burden, and what this means for their  care.  As  part  of  this  review,  we  will  consult  with a  range  of  interested  people,  such  as patients, informal care givers, various    healthcare    professionals,    policymakers and commissioners (who  are  responsible for  planning,  buying  and monitoring  services).  This  will ensure that the findings are relevant for improving primary care service provision and to older adults living with multiple long-term conditions within the community.

Focus  groups  are  a  way  of  collecting information about people’s thoughts and experiences.  We will hold six focus groups, each with 6-10members from North Staffordshire, Bristol and Oxford,  totalling  approximately 36-60  participants. We  will  try  to  recruit  a  diverse  range  of people to take part and will seek participants from charities, religious groups and community groups. As well as asking questions, in focus groups we will invite participants to use creative methods to produce something that illustrates their experiences of living with their illnesses and how they feel about using the health service.

Each group will agree which methods to use. Methods may include writing poetry, drawing, making collages or taking photographs. The important thing is that it helps everyone to express themselves. We  will  create  a  digital  exhibition  of  what  is  produced  during  the  focus  groups(open  to  the public). In addition, we will share findings of our scoping review and focus groups on blogs, in academic journals, at academic conferences, with relevant charities and organisations. We will also work with stakeholders to agree important next steps for improving care for older adults to be shared with others who may be involved in providing services for individuals with multiple long-term conditions.

Amount Awarded: £124,195