Background

Carer breakdown often leads to crisis hospital admissions of the dying. To make people’s preference to die at home feasible, carer support, especially for older carers, must improve.  This study aims to facilitate improvements in support for older carers through involving carers as partners in the research process.

Method

Stage One: 34 older people (56-82 years) with experience of looking after someone with advanced cancer were recruited to attend one of four discussion workshops (N=26) or an interview (N=8).

Participants discussed their experiences of care-giving and support, and decided which support needs improving as a priority.

Stage Two:

Fieldwork participants were invited to stay involved in this project / carer-related research. 18 expressed interest: ten of these have received some research training to enable them to develop the competencies and confidence to work as research partners in research activities that suit their skills and interests. The other eight have been invited to stay involved on a more informal basis.

Results

Analysis reveals generally profound but contrasting experiences of caring for someone with advanced cancer and of receiving support. Highly valued types of support include emotional support and regular communication with friends, family and health professionals, and opportunities for breaks. Often, these were the types of support lacking or unavailable to those who had largely negative experiences.  Despite different experiences, the supports prioritised for improvement were routine health checks/prompt health care; tailored and timely practical help; assistance with form-filling, and more accessible and reliable (not IT-based) information.

Conclusion

Reasons to stay involved in research are variable. The research partners include people with diverse care experiences: for some, involvement provides a way for them to use their negative experiences to influence the development of better services, for others it provides a way to repay providers for good support received and/or treatment of the person they looked after.