Chapter 4 Family Engagement
4.1 For the families of children who die in Scotland each year, there is a huge variation in the circumstances of these deaths, the number of professionals involved with a family, the communication that takes place following their child's death and the support the family is offered. Active engagement of bereaved parents, so far as appropriate and desired, should be a central feature of the process. A family's ability to begin to grieve for their child, accept their death and begin to live without their child is affected greatly by their experiences with professionals soon after their child dies .
Informing parents/carers about the CDR process
4.2 Parents/carers can value open and honest discussions, through direct contact, to inform them of what will happen and to feedback what has happened. Parents/carers should know from the outset what the review process is and its purpose. Parents/carers should be informed that their child's death will be reviewed. They may have significant information and questions to contribute to the review process, thus parental input forms could be made available for this purpose. These forms should be uniform to the national process.
4.3 Upon the Regional Office commencing to request information from relevant sources, it should be agreed and documented who the person liaising with the parents/carers will be. Engagement should commence at this point. Support should be available throughout the child death review process, with the parents/carers kept informed of progress. Face-to-face meetings should be offered, as a standard. Documents and signposting to electronic information should be used to support direct contact, but not as the sole or preferred source of communication for families.
Appointing a family liaison professional
4.4 In each individual circumstance, an appropriate professional should be identified to support the family through the process by the Regional Office, and that appointment should be recorded by them. This role should be termed as the Family Engagement Person. The appointed and appropriate professional should be known to the family, preferably with an already established relationship and a level of trust. Without being exhaustive such persons are likely to be: a General Practitioner; Social Worker; Health Visitor; Midwife; Paediatrician; Community Psychiatric Nurse; or Nurse.
4.5 Feedback to family members should be restricted to those who have a right to know. Information imparted to them may be sourced from review reports. Careful consideration on a case-by-case basis should be given to the family's needs, wishes and personal circumstances when feeding back review outcomes.
Explaining the CDR process to the family
4.6 Professionals supporting parents and family members should inform the following:
- The objective of the child death review process is not to allocate blame, but to learn lessons.
- The purpose of the child death review is to help prevent further such child deaths.
- The remit of a CDR meeting is a discussion on each child's case.
Reference to paragraph 1.11 of this report may assist.
4.7 Relevant information may be sought from parents/carers prior to the CDR meeting. They should know that any information provided about their child will be treated with sensitivity, respect and with confidentiality. Only those who require information and who sit on a Review Panel will see that information. The results and conclusion of a Review Panel will be anonymised, thus preserving confidentiality.
4.8 Parents/carers should be advised that aggregated anonymised information from reviews will be used to inform learning, policymaking issues, public health campaigns etc. Parents/carers should be informed of the outcome of their own child's review meeting. They should be asked if they wish to be informed when national reports are being published so that they may source the report. The Regional Offices would assume this task.
4.9 If parents/carers have any concerns about the review process and wish to discuss these, they should be provided with contact details of the NRC Coordinator.
When should engagement begin?
4.10 Early communication between key professionals to form an agreement as to who is to liaise with the parents/carers, and at what key points, will be essential. This should be supported by the Regional Office. Parents/carers should be aware as early as possible of the processes which follow their child's death.
4.11 Additionally, parents/carers should be offered information on local, regional and national charities who can offer them bereavement support. A Child Death Review pamphlet explaining the process with relevant information should be available.
4.12 Where a child is born with a medical condition and it is expected the child will die in the neonatal period (first 28 days of life), it is likely that support will be provided by staff in the hospital setting. In such a circumstance it may appear appropriate for a member of that staff to be the Family Engagement Person. In any expected child death there may be key health professionals involved with the family, who are appropriate for that role.
4.13 When a child dies suddenly and unexpectedly, whether in the neonatal period or any time after, many different professionals will be involved with the family. A professional point of contact for the Child Death Review process should be appointed. A member of staff, within a hospital where the child was taken, may be appointed as a named point of contact for the parents/carers and will provide them with the information and follow up, as required. However not all children who die are taken to hospital and arrangements should be put in place to identify a professional point of contact in these circumstances. In all circumstances a Family Engagement Person should be appointed, who should link with other professionals to ensure the parents/carers are kept informed.
4.14 Where the death of a child may have an impact on future pregnancies or on the health of existing siblings, it will be an explicit part of the review process that it is confirmed whether parents have already been linked with relevant professionals.
When families do not engage
4.15 The complexity of parental bereavement and an understanding of why parents might be deemed "hard to reach" is pertinent. The death of a child is a traumatic event that can have long-term effects on the lives of parents. Parents do not expect to outlive their children and rarely is a parent prepared for a child's death. The length of life does not determine the size of the loss. The death of a child alters every aspect of family life.
4.16 The death of a sibling is a profound loss for a child and other family members, and grief is equally profound. It takes many forms, can be intense and can lead to further harm.
4.17 The Family Engagement Person will require to be aware of the many reasons why parents may not be responsive. People have different reactions and feelings after the death of a child and may grieve the loss in different ways. Useful resources such as the draft guidance note (see Annex 6) offers some background information to the professional appointed to support a family.
4.18 Any communication with parents/carers should consider significant days such as the child's birthday, anniversary of death, dates when they may have been starting school or graduating - these can be common triggers for grief. The needs of a family may alter over time and the Family Engagement Person ought to offer further information at a later date if this is considered appropriate.
4.19 The Steering Group considered family members should not attend Child Death Reviews. They should, however, be engaged in the process, if so desired, through the Family Engagement Person.
Email: Mary Sloan