Poster Presentation Cancer Survivorship 2019

A review of interventions and online resources to improve carer involvement in medical consultations and decision-making (#133)

Rachael Keast 1 , Rebekah Laidsaar-Powell 1 , Phyllis Butow 1 2 , Daniel Costa 3 4 , Ilona Juraskova 1 2
  1. Centre for Medical Psychology & Evidence-based Decision-making, The University of Sydney, CAMPERDOWN, NSW, Australia
  2. Psycho-Oncology Cooperative Research Group, The University of Sydney, CAMPERDOWN, NSW, Australia
  3. Sydney Medical School, The University of Sydney, CAMPERDOWN, NSW, Australia
  4. Pain Management Research Institute, Royal North Shore Hospital, St Leonards, NSW, Australia

 

Aims: Family carers often attend medical consultations and can be valuable members of the cancer care team, however some family carers report feeling overwhelmed and unsure of their role. We aimed to understand what help and guidance exists for family carers on how to be effectively involved in medical consultations and decisions, by reviewing the academic evidence-base as well as the web-resources directly available to carers.

Methods: Relevant studies of carer-directed interventions or tools published from 1950-2018 were identified via database searches (Medline, Scopus, CINAHL, PsycINFO). Searches were also performed using lay search strings on Google, to identify websites directed at carers that provided information or advice on being involved in medical consultations, communicating with health professionals, advocacy, or decision-making.

Results: Academic database searches retrieved 12 eligible studies with the majority targeting carers of cancer patients. The interventions and tools reported were question-prompt lists, communication skills workshops and coaching, and checklists and written guides. Positive carer outcomes included increased self-efficacy, greater involvement in consultations and reduced distress. However, only two interventions had been rigorously tested in randomised controlled trials. The Google searches yielded 24 relevant websites, including 9 directed specifically at carers of people with cancer. Websites provided tips on preparing for medical consultations (e.g. self-educating, writing question lists and negotiating roles) and participating in consultations (e.g. how to communicate assertively with HPs, ensure understanding, and record information).

Conclusions: Together, these reviews provide insight into carer-directed interventions and resources. The findings will be used to inform the development of an online education module (eTRIO-pc) for cancer carers. By educating and empowering family members on how to be effectively involved in consultations and communicate with health professionals, it is hoped that both patient and carer outcomes will be improved across the cancer care trajectory, including into survivorship.