Purpose: Patients with pancreatic cancer have extremely high unmet psychological and physical needs. Family carers of these patients have even higher levels of distress than patients. Our purpose was to assess the feasibility and acceptability of a counselling intervention in patients diagnosed with pancreatic cancer and their carers.
Methods: We conducted a single-arm feasibility study of the PREPARES (Patients and RElatives affected by PAncreatic cancer: Referral, Education and Support) pilot intervention. Patient and carer participants received up to nine counselling sessions delivered by a trained nurse via telephone and/or telehealth technology. The intervention, informed by self-efficacy theory, involved components to assess and address care needs, and provide feedback to clinicians. Feasibility was measured using participation and retention rates. Participants and the nurse-counsellors completed semi-structured interviews at the end about acceptability. These were analysed using thematic analysis.
Results: Twelve people participated: five patients and seven carers (38% and 50% participation rates respectively). Most participants (eight) completed all nine counselling sessions; two chose to receive fewer sessions and two were discontinued requiring more intensive psychiatric support. The intervention was feasible and highly acceptable. Participants unanimously preferred the telephone over video-conferencing as it was convenient and offered anonymity for participants and a safe space to open up. They also preferred to receive counselling separately from their carer/patient as it enabled them to talk freely without fear of upsetting the other's feelings. The main perceived benefits were: 1) the independent emotional support provided by the nurse-counsellors; 2) the self-efficacy gained; 3) the coordination of care between the nurse-counsellors and treating team; and 4) the personalised care provided in the form of care plans, tailored strategies and email summaries. Suggested improvements included a welcome pack including information about their nurse-counsellor and that counselling should continue beyond nine sessions if required. The nurse-counsellors’ feedback about the intervention delivery was concordant with participants' feedback. They did, however, observe that carers often had to be reminded that the sessions were to support the carers themselves.
Conclusions: This was the first psychoeducation intervention for patients with pancreatic cancer and their carers, for whom the frequently short survival leaves little time to create a true therapeutic alliance with the treating team, and to deal with existential crisis, practical considerations, and advance care planning. In this setting, the theoretical framework of self-efficacy and telephone delivery worked well. This low-cost intervention provided much-needed support to people affected by this devastating disease.