Quality statement 3: Emotional and psychological support

Quality statement

Infants, children and young people with a life-limiting condition and their parents or carers are given information about emotional and psychological support, including how to access it.

Rationale

Infants, children and young people with life-limiting conditions can face a wide range of stressful and distressing circumstances, particularly when they become aware that their life will be shortened. Emotional support for children and young people can help them cope with their distress and build resilience. This can help reduce the risk of developing psychological problems and enhance quality of life. Information should also be provided to parents and carers, especially those with infants and children who are too young to understand the information.

Quality measures

Structure

Evidence of local arrangements to ensure that information about emotional and psychological support for infants, children and young people, including how to access it, is available for infants, children and young people with a life-limiting condition and their parents or carers.

Data source: Local data collection.

Process

Proportion of children and young people with a life-limiting condition and their parents or carers who are given information about emotional and psychological support, including how to access it.

Numerator – the number in the denominator who are given information about emotional and psychological support, including how to access it.

Denominator – the number of children and young people with a life-limiting condition and their parents or carers.

Data source: Local data collection based on audits of patient care records. Receipt of information can be measured at key points, for example, at diagnosis, during regular reviews, and at discharge from hospital.

Outcome

Level of satisfaction of infants, children and young people with a life-limiting condition, and their parents or carers, with information they are given about emotional and psychological support.

Data source: Local data collection based on feedback from children and young people with a life-limiting condition and their parents and carers.

What the quality statement means for different audiences

Service providers (such as hospitals, hospices, GP practices and community nursing services) ensure that information about emotional and psychological support for children and young people, including how to access it, is available for infants, children and young people with a life-limiting condition and their parents or carers. They also consider how support can be provided to siblings.

Health and social care practitioners (such as secondary care doctors, nurses, GPs, community nurses and care workers) give children and young people with a life-limiting condition, and their parents or carers, information about emotional and psychological support for children and young people, including how to access it. They also consider how support can be provided to siblings.

Commissioners (clinical commissioning groups) ensure that the services they commission include psychological support for children and young people with life-limiting conditions. They also consider how the services they commission can support siblings.

Babies, children and young people with a condition that may shorten their life are given information that they and their parents can use to let them know what emotional and psychological support is available and how to get it. Brothers and sisters are also considered for support.

Definitions of terms used in this quality statement

Emotional and psychological support

The provision of psychological and psychotherapeutic interventions and therapies delivered or directly supervised by qualified psychological practitioners or psychotherapists with professional accreditation and registration. Practitioners providing interventions for families affected by childhood life-limiting conditions need to be skilled in both the evidence-based therapeutic approach and in adapting therapies to themes of medical decision-making, loss, death, dying, bereavement and early intervention to develop resilience and supportive family relationships.

[NICE's guideline on end of life care for infants, children and young people with life-limiting conditions]

Equality and diversity considerations

Children and young people with life-limiting conditions who have a learning disability may have difficulties understanding information provided to them. Healthcare practitioners caring for children and young people with a life-limiting condition should establish if the person has a learning disability and tailor any information accordingly. All support provided should be accessible, as far as possible, to people with learning disabilities.