Patients in a qualitative study linked their decision to nominate a family caregiver for an online support programme to recognition of the burden on caregivers and a wish for those caregivers to receive support. The paper's conclusion described the motives as love, guilt and responsibility.
They expected the programme to encourage conversations about emotions, illness and the future. They also saw a possible personal benefit: if caregiver burden became too heavy, support might help them remain at home.
Choosing someone who could take part
Patients made careful nomination choices and avoided people they perceived as too frail or too busy. The study describes nomination as a decision that took the potential caregiver's ability to participate into account.
That reasoning kept caregiver burden at the center of the nomination decision. Patients were seeking support for someone close to them while considering whether that person could take on the role.
What the researchers heard
The researchers used an interpretive descriptive qualitative design. They set out to understand patients' expectations of a web-based programme for family caregivers and the motives behind their nominations.
Patients were recruited after their family caregivers had taken part in the parent trial's intervention arm. The researchers invited 30 patients consecutively; 22 agreed to be interviewed and eight declined. Reported reasons for declining included feeling unwell, not having time or failing to answer after two calls.
The team conducted 22 individual audio-recorded semistructured interviews. One was face to face and 21 were by telephone. The median interview lasted 40 minutes, with durations ranging from 24 to 126 minutes. Interviews were held between February and May 2024. The researchers analyzed the transcripts using interpretive description, looking for patterns and forming tentative themes before reaching author consensus.
The participants' median age was 73, with ages ranging from 50 to 86. Fourteen had university-level studies, 19 were partners of the participating family caregiver and 20 had been diagnosed with cancer.
The programme behind the interviews
The online intervention came from a randomized parent trial of family caregivers. That trial included 205 caregivers, with 103 in the intervention group and 102 in the control group. The programme targeted preparedness for caregiving and death and offered 23 videos, supplementary texts, links to useful resources and a moderated chat forum.
The parent trial was registered at ClinicalTrials.gov as NCT05785494 on 7 February 2023. The patient interviews focused on what patients expected the intervention to provide and why they selected a particular caregiver, rather than reporting results for the intervention and control groups.
What the findings cannot answer
The interviews recorded expectations that the programme would encourage conversations, not measured conversational outcomes. The possible value of remaining at home was a participant perception, not an observed outcome, and the qualitative study reported no numerical intervention-effect estimate.
Selection bias could not be ruled out. Patients in the worst condition may have been more likely to decline, leaving important perspectives missing. The study therefore cannot tell us whether the same motives would be heard from patients who were too ill to participate.
The study also gives no measure of how common any one motive was. Its findings describe patients' accounts rather than estimating the size of an effect or the frequency of a view.
Results from the parent randomized trial are needed to determine whether caregiver-targeted support changes caregiver preparedness or other outcomes. Further work is needed to hear from patients in worse condition and from caregivers who are not reached through patient nomination.
The study followed the Declaration of Helsinki, received approval from the Swedish Ethical Review Authority under 2022-02218-02 and 2022-06623-02, and obtained written informed consent from all participants.
The work was supported by the Swedish Research Council grant 2021-00860 and the Swedish Cancer Society grant 21 1385 Pj. The authors declared no competing interests.
The interview data are not publicly available because of the cited data-protection and ethics rules, but they are available from the corresponding author upon reasonable request.
Paper data and sources
Original title: Expectations and motives for nominating a family caregiver to partake in a web-based psychoeducational intervention: perspectives of patients with advanced illness in palliative care.
Authors: Sandra Doveson, Viktoria Wallin, Ulrika Kreicbergs, Anette Alvariza
Journal/Repository: Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer
Status: Peer-reviewed
First online: 2026-08-20
DOI: 10.1007/s00520-026-11105-y
Original paper · Full text