Delphi round 1
In Delphi round
1, 19 out of 21 (90.5%) of the presented recommendations achieved consensus with respect to both assessment criteria. The panelists disagreed on 2 (9.5%) items, and these items were adjusted for the second Delphi round according to participants’ free text comments (see Table
2).
Table 2
Core themes and number of Delphi recommendations
1 | Relationship with dyad partner | 6 | 1 | 5 | 0 | 0 | 0 | 6 | 6 |
2 | Communication and information | 6 | 1 | 4 | 1 | 0 | 0 | 5 | 6 |
3 | Support and relief | 9 | 0 | 2 | 7 | 0 | 0 | 2 | 9 |
| Sum | 21 | 2 | 11 | 8 | 0 | 0 | 13 | 21 |
For the first core theme, “relationship with dyad partner,” all recommendations except for R-1.5 achieved consensus in both evaluation criteria (see Table
3 on levels of agreement). R-1.5 achieved consensus with respect to relevance for everyday practice, but only 75.8% consensus in terms of feasibility. Participant feedback indicated concern that the actors who would be tasked with realizing this recommendation were not specified. Furthermore, the limited time involved in end-of-life situations was seen to hinder the suggested biography work. Finally, participants commented that they were missing information on how the ill parent and adult child caregiver would be supported in allowing and voicing accusations from and towards the dyadic other.
Table 3
Level of agreement on relevance and feasibility for Delphi statements
1st core theme: relationship with dyad partner |
R-1.1 | 2 (1) | 1 + 2 | 100 | 96.3 | 27 |
R-1.2 | 2 (1) | 1 + 2 | 100 | 100 | 27 |
R-1.3 | 2 (1) | 1 | 100 | 96.3 | 27 |
R-1.4 | 2 (1) | 1 | 96.3 | 85.2 | 27 |
R-1.5 | 2 | 2 | 100 | 92.6 | 27 |
R-1.6 | 2 (1) | 2 | 100 | 96.3 | 27 |
2nd core theme: communication and information |
R-2.1 | 2 (1) | 1 + 2 | 96.3 | 92.6 | 27 |
R-2.2 | 2 (1) | 1 + 2 | 100 | 92.6 | 27 |
R-2.3 | 1 | 1 | 93.9 | 87.9 | 33 |
R-2.4 | 2(1) | 2 | 96.3 | 96.3 | 27 |
R-2.5 | 2 | 2 | 96.3 | 92.6 | 27 |
R-2.6 | 2 (1) | 2 | 96.3 | 96.3 | 33 |
3rd core theme: support and relief |
R-3.1 | 1 | 1 + 2 | 93.9 | 87.9 | 33 |
R-3.2 | 1 | 1 | 93.9 | 90.9 | 33 |
R-3.3 | 1 | 1 | 93.9 | 97.0 | 33 |
R-3.4 | 1 | 2 | 97.0 | 97.0 | 33 |
R-3.5 | 1 | 2 | 97.0 | 87.9 | 33 |
R-3.6 | 1 | 2 | 93.9 | 97.0 | 33 |
R-3.7 | 2 (1) | 2 | 100 | 92.6 | 27 |
R-3.8 | 1 | 2 | 97.0 | 90.9 | 33 |
R-3.9 | 2 (1) | 2 | 96.3 | 92.6 | 27 |
With respect to the second core theme, “communication and information,” one (R-2.5) of the six recommendations only achieved 75.8% approval with respect to feasibility and, thus, did not achieve consensus in the first round. Participants endorsed the inclusion of an explanation that psychosocial support would only be offered when family communication patterns were perceived as burdensome and the patient and/or caregiver expressed a need for change. Depending on the situation, only one dyad partner or both dyad partners would be offered support.
All recommendations for the third core theme, “support and relief,” achieved consensus with respect to both evaluation criteria.
In addition to the unconsented recommendations R-1.5 and R-2.5, 11 (R-1.1, R-1.2. R-1.3, R-1.4, R-1.6, R-2.1, R-2.2, R.2.4, R-2.6, R-3.7, R-3.9) of the 19 consented recommendations were adapted for the second Delphi round, in order to incorporate participants’ valuable feedback for improvement.
Participants’ suggestions regarding the first core theme, “relationship with dyad partner” (R-1.1, R-1.2. R-1.3, R-1.4, R-1.6), primarily pertained to exploring the experience of losing a loved one, non-judgmental responding to patients’ and family caregivers’ perceptions of their relationship, and the potential opportunities involved in exploring role reversal and individual needs.
Regarding the second core theme, “communication and information” (R-2.2, R.2.4, R-2.6), participants’ remarks emphasized their need for clarification on the professions of those who would be offering support to patients/caregivers, particularly with respect to supporting patients/caregivers in accepting that communication may change in the terminal illness situation and that, at some point, patients may not wish to talk about dying and death.
Only two recommendations pertaining to the third core theme, “support and relief” (R-3.7, R-3.9), were included in the second Delphi round. Participants’ strongest suggestions were to support caregiving adult children in developing different attitudes towards their feelings of guilt around their limited ability to care for their ill parents and to elicit additional resources to help patients and caregivers.
Some comments cut across the individual recommendations and were incorporated into an introductory text that framed the recommendations. These comments concerned the importance of considering individual differences between patients (with respect to, e.g., their expected remaining lifetime and perceptions of what is burdensome), the application of the recommendations only when patients/caregivers expressed a need for action, the framework conditions in which the recommendations would be applied (e.g. ambulatory vs. inpatient settings), and clarification that the recommendations were directed at psychosocial professionals, palliative care teams, and family doctors.