RT Journal Article
SR Electronic
T1 Codesigning a supportive online resource for Australian cancer carers: a thematic analysis of informal carers’ and healthcare professionals’ perspectives about carers’ responsibilities and content needs
JF BMJ Open
JO BMJ Open
FD British Medical Journal Publishing Group
SP e055026
DO 10.1136/bmjopen-2021-055026
VO 11
IS 10
A1 Sharnel Miriam Perera
A1 Clare O’Callaghan
A1 Anna Ugalde
A1 Olinda Santin
A1 Cassandra Beer
A1 G Prue
A1 Katherine Lane
A1 Gerard G Hanna
A1 Penelope Schofield
YR 2021
UL http://bmjopen.bmj.com/content/11/10/e055026.abstract
AB Objective To gather preliminary qualitative data that will assist in the codesign and development of a new informational and supportive website to assist informal cancer carers in Australia.Design and setting Utilising a previously tested codesign process, informal carers’ experiences and perspectives, including those of healthcare professionals’, were examined via focus groups and/or interviews. Data were analysed via thematic analysis.Participants Rural (n=9) and urban (n=11) carers’, and healthcare professionals’ (n=8) perspectives were collected. Carers participated in a focus group (n=9) or telephone interview (n=11). Healthcare professionals completed an interview (n=6) or online survey (n=2).Results Rural and urban carers typically felt ill prepared for their multitudinal caregiving responsibilities. Supporting patient-to-healthcare professional liaisons could especially challenge. Carers’ biopsychosocial and fiscal strains were affected by patients’ hardships and available informal supports. Rural carers described greater social support than urban carers. Both rural and urban carers also described discontentment related to a carer neglecting healthcare system. Both carers and healthcare professionals endorsed the need for a user-friendly, carer-specific website encompassing practical information and resources, peer-driven advice and evidence-based illness information, tailored to the Australian context.Conclusions Carers and healthcare professionals recognise the pressing need for an Australian, cancer carer-specific online resource. Findings will inform the next phase, where a resource will be designed, developed and tested.Data are available on reasonable request.