Quality statement 5: Support for grief and loss for parents or carers

Quality statement

Parents or carers of infants, children and young people approaching the end of life are offered support for grief and loss when their child is nearing the end of their life and after their death.

Rationale

Support for grief and loss can help parents or carers as well as siblings to cope before and after the death of their child. It can help with emotional and anxiety and depression, and relationship issues, and provide information on how to talk to other family members and tell them what has happened. Support for grief and loss can also provide advice on care following death, including information about post-mortems.

Quality measures

Structure

Evidence of local arrangements to provide support for grief and loss to parents or carers when infants, children and young people are approaching the end of life and after their death.

Data source: Local data collection.

Process

a) Proportion of parents or carers of infants, children and young people with a life-limiting condition, who had a plan for support with grief and loss before the death of the infant, child or young person.

Numerator – the number in the denominator whose parents and carers had a plan for support with grief and loss before the death of the infant, child or young person.

Denominator – the number of infants, children and young people with a life-limiting condition who have died.

Data source: Local data collection based on audits of patient care records.

b) Proportion of parents or carers of infants, children and young people with a life-limiting condition who have a plan for support with grief and loss after the death of the infant, child or young person.

Numerator – the number in the denominator who have a plan for support with grief and loss after the death of the infant, child or young person.

Denominator – the number of parents or carers of infants, children and young people with a life-limiting condition who have died.

Data source: Local data collection based on audits of patient care records.

Outcome

Level of satisfaction with grief and loss support in parents or carers of infants, children and young people receiving end of life care.

Data source: Local data collection based on feedback from the parents and carers of children and young people who have died following care for a life-limiting condition.

What the quality statement means for different audiences

Service providers (such as hospitals, hospices, GP practices and community nursing services) ensure that systems are in place to offer grief and loss support to parents or carers of infants, children and young people when their child is approaching the end of life and after their death. They also consider how support can be provided to siblings.

Health and social care practitioners (such as secondary care doctors, nurses, GPs and community nurses) are aware of referral pathways to services that offer grief and loss support to parents or carers of infants, children and young people when their child is approaching the end of life and after their death. They also consider the support needs of siblings.

Commissioners (clinical commissioning groups) ensure that they commission services that include grief and loss support for parents or carers of infants, children and young people when their child is approaching the end of life and after their death. They also consider how the services they commission can support siblings.

Parents or carers of babies, children and young people are offered grief and loss support when their child is nearing the end of their life and after their death. The brothers and sisters of children nearing the end of life may also benefit from support for grief and loss.

Definitions of terms used in this quality statement

Grief and loss support

Therapies aimed at supporting a person anticipating or experiencing the loss of a loved one.

[Expert opinion]

Equality and diversity considerations

Parents and carers of infants, children and young people with a life-limiting condition may have a learning disability that means they have difficulties understanding information given to them about grief and loss support. Healthcare practitioners caring for infants, children and young people with a life-limiting condition should establish if the child's parents or carers have any learning disabilities. All support provided should be accessible, as far as possible, to people with learning disabilities.