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  • 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

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Health services research
Original research
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
  1. Sharnel Miriam Perera1,2,
  2. Clare O’Callaghan3,4,
  3. Anna Ugalde5,
  4. Olinda Santin6,
  5. Cassandra Beer2,7,
  6. G Prue8,
  7. Katherine Lane9,
  8. Gerard G Hanna10,11,
  9. Penelope Schofield1,2
  1. 1Department of Psychology and Iverson Health Innovation Research Institute, Swinburne University of Technology, Hawthorn, Victoria, Australia
  2. 2Health Services Research, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia
  3. 3Department of Medicine, St Vincent's Hospital, The University of Melbourne, Melbourne, Victoria, Australia
  4. 4Caritas Christi Hospice and Department of Psychosocial Cancer Care, St Vincent’s Hospital, Melbourne, Victoria, Australia
  5. 5Institute for Health Transformation, Deakin University, Burwood, Victoria, Australia
  6. 6School of Nursing and Midwifery, Queen's University Belfast, Northern Ireland, UK
  7. 7Prevention and Wellbeing, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia
  8. 8Medical Biology Centre, Queen's University Belfast School of Nursing and Midwifery, Northern Ireland, UK
  9. 9Cancer Information and Support Services, Cancer Council Victoria, Melbourne, Victoria, Australia
  10. 10Sir Peter MacCallum Department of Oncology, The University of Melbourne, Melbourne, Victoria, Australia
  11. 11Division of Radiation Oncology, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia
  1. Correspondence to Dr Penelope Schofield; pschofield{at}swin.edu.au

Abstract

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.

  • public health
  • quality in health care
  • oncology

Data availability statement

Data are available on reasonable request.

http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

http://dx.doi.org/10.1136/bmjopen-2021-055026

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    Data availability statement

    Data are available on reasonable request.

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    Footnotes

    • Contributors PS and OS conceptualised the study, developed the grant application, and oversaw the implementation and conduct of the study. SMP conducted the carer and HCP interviews, lead the carer focus groups, and the manuscript write-up. CO’C and SMP lead the data analysis and interpretation. All authors contributed to the manuscript write-up. The authors wish to thank Dee Gill and Martina Clark for their valuable input throughout this study.

    • Funding This study was funded by the Australian Government Cancer Australia ‘Supporting People with Cancer’ Grant Initiative (CA-ITA-181901).

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.