Results after final round of Delphi
| Theme | No | Statement | Mean score | SD | Median | IQR 25 | IQR 75 |
| When communicating with families a standardised approach should be applied to… | 1 | Agreeing to the message communicated to families to avoid giving conflicting ambiguous messages. | 4.4 | 0.8 | 4 | 4 | 5 |
| 2 | Assessing the families’ concerns so as to ensure they are directed to the right person in any discussion. | 4.9 | 0.4 | 5 | 5 | 5 | |
| 3 | Noting discussions. | 4.6 | 0.7 | 5 | 4 | 5 | |
| 4 | Ensuring the preceding antenatal consultations are shared among the treating team in a coordinated manner. | 4.9 | 0.4 | 5 | 5 | 5 | |
| 5 | Acknowledging the contribution of all professionals from consultant to bedside nurse to junior doctor. | 4.6 | 1.1 | 5 | 4 | 5 | |
| 6 | Information sharing among professionals. | 4.8 | 0.5 | 5 | 5 | 5 | |
| 7 | Using ‘family held records’ to allow families to document meetings, their content and reflections of understanding. | 4.1 | 0.7 | 4 | 4 | 5 | |
| When communicating between professionals… | 8 | Processes should be put in place by the hospital trust to strengthen communication between community care providers, hospices and regional hospitals. | 4.6 | 0.6 | 5 | 4 | 5 |
| 9 | Professionals in the ‘team around the child’ should be acknowledged and identified early in the child’s care pathway. | 4.7 | 0.5 | 5 | 4 | 5 | |
| 10 | A case worker/liaison nurse should be assigned to each complex case to improve coordination across different teams. | 4.7 | 0.6 | 5 | 4 | 5 | |
| 11 | A single clinical lead for the child should be defined across all the involved specialty teams. | 4.7 | 0.5 | 5 | 4 | 5 | |
| In the process of shared decision-making in the child’s best interests… | 12 | We need to be honest with families about medical uncertainty. | 4.9 | 0.3 | 5 | 5 | 5 |
| 13 | There should be a holistic assessment of the child and families’ wishes, values and goals to inform more complex decisions later. | 4.4 | 0.7 | 5 | 4 | 5 | |
| 14 | We need to, where possible and appropriate, listen to what children have to say. | 3.7 | 1.0 | 4 | 3 | 4 | |
| 15 | Be aware that children may have motivations separate from what they may say (eg, wanting to please their parents). | 4.6 | 1.0 | 5 | 4 | 5 | |
| 16 | Children have rights and these may require independent advocacy even if this means healthcare professionals disagreeing with their parents. | 4.8 | 0.4 | 5 | 5 | 5 | |
| 17 | A holistic assessment of the child and families’ wishes, values and goals should include an assessment of their spiritual and religious beliefs. | 4.8 | 0.4 | 5 | 5 | 5 | |
| 18 | We should engage families in ‘parallel planning’ early and routinely in a child’s disease course. | 4.8 | 0.5 | 5 | 5 | 5 | |
| 19 | Professionals need training to understand the legal framework in which they operate. | 4.8 | 0.4 | 5 | 5 | 5 | |
| 20 | Professionals need to be trained in communication techniques. | 4.7 | 0.5 | 5 | 4 | 5 | |
| 21 | A holistic assessment of the child and families’ wishes, values and goals should be done in partnership with members of the child’s multidisciplinary team (MDT). | 4.5 | 0.7 | 5 | 4 | 5 | |
| 22 | We should try to provide options rather than making closed recommendations. | 4.5 | 0.8 | 5 | 4 | 5 | |
| 23 | Professionals find it distressing when they are unable to fix medical problems and need supporting when this happens. | 4.3 | 0.8 | 4 | 4 | 5 | |
| 24 | We need to transparently share our own values and goals with families and children. | 4.5 | 0.7 | 5 | 4 | 5 | |
| The multidisciplinary team (MDT) should… | 25 | Be well supported through administrative assistance with preparation and note taking. | 4.4 | 0.6 | 4 | 4 | 5 |
| 26 | Have outcomes recorded in a consistent and transparent fashion. | 4.3 | 0.8 | 4 | 4 | 5 | |
| 27 | Be recognised in job plans, given that repeated attendance at multidisciplinary team (MDT) meetings by recognised key professionals is onerous and takes time. | 4.6 | 0.6 | 5 | 4 | 5 | |
| 28 | Be held in an appropriate physical environment to enable clarity of discussion. | 4.8 | 0.4 | 5 | 5 | 5 | |
| 29 | Be attended by the wider team including hospital, community and hospice representatives. | 3.6 | 1.0 | 4 | 3 | 4 | |
| 30 | Ensure that appropriate weight is given to all expressed views. | 3.0 | 0.8 | 3 | 3 | 3 | |
| 31 | Be chaired by professionals who are trained in chairing such meetings. | 4.7 | 0.5 | 5 | 4 | 5 | |
| 32 | Only take place when attempts have been made to understand the child’s values and goals. | 4.4 | 0.7 | 4 | 4 | 5 | |
| 33 | Be chaired by a professional outside the child’s primary clinical team. | 4.1 | 0.7 | 4 | 4 | 5 | |
| When managing professional–parental disagreement or conflict… | 34 | Families should be given realistic honestly held opinions. | 4.3 | 0.7 | 4 | 4 | 5 |
| 35 | We need to better recognise and support mental health issues in families. | 4.3 | 0.7 | 4 | 4 | 5 | |
| 36 | We need to prevent the ‘threat response’ whereby professionals adopt behaviours to avoid contact with families/each other. | 4.8 | 0.4 | 5 | 5 | 5 | |
| 37 | The organisation should recognise that (in a rights and consumer-based society) any framework that is put in place to improve decision-making may not negate conflict and/or complaint. | 4.7 | 0.8 | 5 | 4 | 5 | |
| 38 | Professional–parental disagreement takes resources and time from other patients and so should be an issue of the highest priority for the organisation. | 4.1 | 0.8 | 4 | 4 | 5 | |
| 39 | The organisation has a responsibility to convey the challenges of decision-making, in the context of patient complexity, to the wider society (local community, NHS leaders, national bodies). | 3.5 | 1.1 | 4 | 3 | 4 | |
| 40 | Families and professionals should receive advice and support on the benefits and risks of social media use. | 4.0 | 1.1 | 4 | 4 | 4 | |
| 41 | Standardised information should be provided to families explaining how the decision-making process works. | 3.6 | 0.8 | 4 | 3 | 4 | |
| 42 | In rare circumstances parental–behavioural contracts are an important tool in addressing disruptive parental behaviour. | 3.7 | 0.8 | 4 | 3 | 4 | |
| 43 | A standardised pathway for decision-making should set out processes for where disagreement arises. | 4.0 | 1.1 | 4 | 4 | 4 | |
| 44 | The Clinical Ethics Advisory Group (CEAG) is an important resource and should be included in any standardised pathway. | 3.8 | 1.3 | 4 | 3 | 4 | |
| 45 | There is a need nationally to standardise processes by which second opinions are sought (when?, who?, how?, with parental engagement?). | 4.1 | 1.1 | 4 | 4 | 5 | |
| 46 | External second opinions should be sought from a national peer-reviewed specialty multidisciplinary team (MDT) where these are available. | 4.3 | 0.6 | 4 | 4 | 5 | |
| 47 | The ward round handover is an important opportunity to identify evolving issues. | 4.7 | 0.5 | 5 | 4 | 5 | |
| 48 | National peer-reviewed multidisciplinary teams (MDTs) should be convened in specialities where they do not exist. | 4.3 | 1.0 | 4 | 4 | 5 | |
| 49 | Gaining an external second opinion is important and should be included in any standardised pathway. | 4.4 | 0.6 | 4 | 4 | 5 | |
| 50 | Gaining a local second opinion is important and should be included in any standardised pathway. | 4.3 | 0.8 | 4 | 4 | 5 | |
| 51 | A ‘traffic light system’ whereby a family’s behaviour is graded allows earlier identification of conflict and should be included in a standardised pathway to reduce conflict. | 4.4 | 1.0 | 4 | 4 | 5 | |
| Clinical psychologists should… | 52 | Be integrated within all clinical teams. | 4.3 | 1.0 | 4 | 4 | 5 |
| 53 | Support the decision-making process. | 4.5 | 1.0 | 5 | 4 | 5 | |
| 54 | Support training in communication techniques. | 4.2 | 1.0 | 4 | 4 | 5 | |
| 55 | Routinely explore family goals and values and explicitly share such information with the multidisciplinary team (MDT). | 4.4 | 0.9 | 4 | 4 | 5 | |
| 56 | Have their role better explained to families. | 4.4 | 0.9 | 4 | 4 | 5 | |
| 57 | Support training in chairing complex multidisciplinary team (MDT) meetings. | 4.2 | 1.0 | 4 | 4 | 5 | |
| 58 | Be involved from the outset in all complex decision-making discussions. | 4.4 | 1.0 | 5 | 4 | 5 | |
| In supporting staff… | 59 | Teams need to adopt process where they can come together to discuss challenging cases. | 4.7 | 0.5 | 5 | 4 | 5 |
| 60 | Teams need to adopt process where individual colleagues are supported. | 4.8 | 0.4 | 5 | 5 | 5 | |
| 61 | The organisation should recognise that parental–professional disagreement (conflict) results in poor morale and staff attrition. | 4.8 | 0.5 | 5 | 5 | 5 | |
| 62 | The organisation should recognise the physical, mental and reputational harms done to professionals in extreme cases of professional–parental disharmony. | 4.8 | 0.4 | 5 | 5 | 5 | |
| 63 | The organisation should recognise that nursing colleagues are particularly vulnerable due to the requirement for them to be at the bedside 24 hours/day. | 4.9 | 0.4 | 5 | 5 | 5 | |
| 64 | The organisation should recognise that HCPs (Healthcare Professionals) ’ intrinsic desire to ‘do the right thing’ through leading in complex cases often over-rides regard for their personal well-being, and increases their vulnerability to experiencing moral distress, compassion fatigue and burnout. | 4.2 | 1.0 | 4 | 4 | 5 | |
| 65 | Professionals should take decisions as a team seeking quoracy (consensus within the core team) wherever possible. | 4.6 | 0.6 | 5 | 4 | 5 | |
| 66 | Staff have a responsibility themselves to access available support options. | 4.2 | 0.7 | 4 | 4 | 5 | |
| 67 | Cross-specialty case forums (such as Schwartz rounds) are helpful for different teams to come together to discuss challenging scenarios. While not part of a decision-making pathway they should be available for staff aftercare. | 3.8 | 0.8 | 4 | 3 | 4 | |
| 68 | The organisation should provide better opportunities for 1:1 and group peer support. | 4.1 | 0.8 | 4 | 4 | 5 | |
| 69 | The organisation should do more to signpost colleagues to available resources. | 4.8 | 0.4 | 5 | 5 | 5 |
HCP, healthcare professional; NHS, National Health Service.