Aims: Most patients want family to be involved in consultations and decisions, however some family carers report feeling overwhelmed and unsure of their role. As patients and carers are increasingly looking to online medical resources for guidance, this study aimed to review the web-resources available to inform and advise family carers on how to be involved in medical consultations and decisions.
Methods: Google searches were performed using lay search strings. Websites were included if they were directed at carers; provided information or advice on being involved in medical consultations, communicating with health professionals, advocacy, or decision-making; and were from a reputable source such as a government, university, hospital, or large not-for-profit organisation. Qualitative analyses were performed on included websites’ content.
Results: Seventy-five potentially relevant webpages were identified, with 29 duplicates and 23 ineligible webpages removed, leaving 24 for full-text analysis. Most webpages consisted of website text or online brochures and were either directed at all carers (11/24) or carers of people with cancer (9/24). Commonly addressed topics were preparing for consultations, with self-education, writing question lists and negotiating roles recommended; and tips for family carers in consultations, including communicating assertively, obtaining information, clarifying understanding and taking notes. Many websites provided guidance on keeping records of the patient’s medical information and updating other family and friends.
Conclusions: This review found several websites are available to guide family carers, particularly for carers of people with cancer. However, the content of most websites was brief and there was limited practical advice for carers on how to be involved in treatment decision-making discussions as well as how to navigate challenging situations (such as advocating for their loved ones needs). Further comprehensive resources that address the many facets of family involvement in medical consultations and decisions are needed to inform and guide family carers.