Support for Parents/Carers
Parents and carers have repeatedly told us that they need emotional support; before, during the time that the complexity and vulnerability of their child's situation is recognised and shared and afterwards. Where possible, both parents should be involved in any discussions and decision making and appropriate written information should be available and provided. Support for siblings is also just as important.
Parents should be actively advised of the future decisions and the pressures which are often inevitable in the care of children with complex and exceptional healthcare needs; but also feel reassured of the support that is available to them. Access to a source of information for further reading and the opportunity for future meetings to answer any questions should always be available.
In 2012 the National Managed Clinical Network for Children with Exceptional Healthcare Needs developed and launched its project ‘Early Support and Expectations after birth or diagnosis of complex needs’. The following statements are taken from this work:
Parents stated that professionals can support them in the following ways:
- Introduce yourself and your role (briefly again each time you meet)
- Check out the understanding of both parents of all the information given
- Listen to parents and take seriously what they say - demonstrate by what you do and say
- Medical students need to learn but there are times when it is not appropriate for people to be exposed when being given sensitive information. Ask yourself whether you would want an audience for this if it were you?
- Sadness when there are complications for a baby is an understandable reaction but all parents need their physical and mental health needs met
- Mixed messages - are you contradicting each other? Ask what parents have been told already
- Parents must be allowed to be glad that their baby has arrived/is alive - in fact whatever they are feeling
- Listen to your colleagues regardless of their grade and place in the hierarchy and respect their relationship with the family
- Do not assume cognitive impairment because of health and mobility impairments
- Remember 'the patient' is someone's baby or child
- Put any machinery or equipment to be provided into context - they may be familiar to you and 'logical' given the child's condition but this will not necessarily be self-explanatory to the parent
- Protocols have been developed for a reason - take time to read and follow them
- If you find yourself feeling defensive, acknowledge it - be human
Be mindful of current legislation concerning gaining consent and identifying capacity. Ensure you are fully aware of the Scottish Government (2000) Adults with Incapacity (Scotland) Act.
A number of voluntary sector organisations can provide emotional support, bring parents in contact with other parents and provide advice about financial support. These organisations include: Action for Sick Children Scotland
; Together for Short Lives
; Capability Scotland
; Children in Scotland
; Contact A Family
; Family Fund
In 2012 the National Managed Clinical Network for Children with Exceptional Healthcare Needs (NMCN CEN) developed and launched its project 'Early Support and Early Expectations after birth or diagnosis of complex needs'. This project led to the development of an early support booklet with information for parents and a workshop for professionals. The booklet and workshop are tools that can be used as part of continuing professional development and can be accessed at: Early Support and Early Expectations When Your Child Has Complex Needs (CEN NMCN, 2012)
Useful web sites: