Supporting patients with advanced cancer and their families
Cancer is a devastating life-altering disease for both patients and those who care for them, posing significant physical, emotional and psychological burden. As the disease progresses, the wellbeing of both patients and family caregivers deteriorates, often resulting in increased distress. Psychosocial support and educational resources can help alleviate some of the impact, enhancing the quality of life for both patients and their caregivers while also reducing the need for unnecessary healthcare interventions.
FOCUS support interventions
The EU-funded DIAdIC project developed and evaluated two interventions aimed at helping patient-caregiver dyads cope with the challenges posed by advanced cancer. The consortium tested two versions of the FOCUS intervention, originally designed by Laurel Northouse, professor of Nursing at the University of Michigan, in six European countries: Belgium, Denmark, Ireland, Italy, the Netherlands and the UK. “We adapted the FOCUS intervention into two types culturally appropriate for European countries: a face-to-face and a web-based intervention,” explains Aline De Vleminck, who co-coordinated the project with Joachim Cohen. The team ensured that these interventions supported family involvement and communication, fostered a positive outlook and reduced uncertainty while assisting caregivers in managing the symptoms. At the end of the study, country-specific virtual versions of the interventions have been developed by the DIAdIC research team in collaboration with local stakeholders to disseminate information to patients and caregivers in different languages.
Customised solutions
The face-to-face FOCUS+ intervention involves two 90-minute home-based sessions led by trained nurses followed by a 30-minute online session. The programme is tailored to the specific needs of each dyad, and a printed guide is provided for further assistance. Nurses have undergone extensive training to intervene effectively and participated in national and international communities of practice to share experiences and improve adherence to the protocol. The iFOCUS intervention is a web-based programme that dyads could independently complete from home. The four online sessions are spread over 12 weeks, with each session tailored based on the specific needs of patients and caregivers, demographic factors and feedback gathered during the sessions. An international multicentre trial involving 431 dyads compared the FOCUS+ and iFOCUS interventions to standard care. The primary effects included emotional functioning and self-efficacy, while secondary outcomes focused on quality of life, coping and communication. The face-to-face FOCUS+ intervention demonstrated effectiveness in improving patients’ self-efficacy and dyadic coping. However, iFOCUS yielded neutral results, suggesting that digital solutions may be less effective in facilitating meaningful interpersonal reflection and support.
Impact on patients and care
“FOCUS interventions made a significant difference in the lives of patients and caregivers, with many participants reporting positive experiences,” highlights De Vleminck. Patients and caregivers who participated in FOCUS+ reported during qualitative interviews (post-intervention) that the intervention improved their communication, enabling difficult conversations they had previously avoided. This strengthened their bond and enhanced their ability to cope with advanced cancer. Moving forward, the DIAdIC team will conduct a thorough process evaluation to better understand the mechanisms behind the success of the FOCUS+ intervention and the limitations of iFOCUS. One key insight is that a one-size-fits-all approach is insufficient and that interventions need to be tailored to the specific needs of each dyad. “We will explore the combination of digital solutions with professional support, as well as the adaptation of interventions to the dyad’s needs,” concludes De Vleminck.
Keywords
DIAdIC, FOCUS intervention, cancer, family caregiver, psychosocial support
