Quality statement 4: Psychological and social support

Quality statement

Children and young people (aged 0–24 years) with cancer, and their families and carers, have their psychological and social needs assessed at key points in their care pathway and receive support based on their identified needs.

Rationale

The impact of a diagnosis of cancer, its prognosis and its treatment can be devastating and wide-ranging for children and young people, and their families and carers. As the child or young person progresses through their care pathway, their psychological and social needs, and those of their family, are likely to change. To help address this, their psychological and social support needs should be reassessed at key points to inform their care plan and to assess the need for specialist services such as psychologists.

Quality measures

Structure

a) Evidence of local arrangements to ensure that children and young people (aged 0–24 years) with cancer, and their families and carers, have their psychological and social needs assessed at key points on their care pathway.

Data source: National Cancer Peer Review Programme Manual for cancer services: children's cancer measures: 11-7B-322 PTC psychosocial assessment guidelines.

b) Evidence of local arrangements to ensure that children and young people (aged 0–24 years) with cancer, and their families and carers, can access services delivering psychological and social support.

Data source: National Cancer Peer Review Programme Manual for cancer services: children's cancer measures: 11-7B-322 PTC psychosocial assessment guidelines.

Process

a) The proportion of children and young people (aged 0–24 years) with cancer reaching a key point in their care pathway who have their psychological and social needs assessed.

Numerator – the number of people in the denominator who have their psychological and social needs assessed.

Denominator – the number of children and young people (aged 0–24 years) with cancer reaching a key point in their care pathway.

Data source: Local data collection.

b) The proportion of children and young people (aged 0–24 years) with cancer reaching a key point in their care pathway whose family and carers have their psychological and social needs assessed.

Numerator – the number of people in the denominator whose family and carers have their psychological and social needs assessed.

Denominator – the number of children and young people (aged 0–24 years) with cancer reaching a key point in their care pathway.

Data source: Local data collection.

c) The proportion of children and young people (aged 0–24 years) with cancer reaching a key point in their care pathway who receive support with identified psychological or social needs.

Numerator – the number of people in the denominator receiving psychological or social support.

Denominator – the number of children and young people (aged 0–24 years) with cancer reaching a key point in their care pathway with identified psychological or social needs.

Data source: Local data collection.

d) The proportion of children and young people (aged 0–24 years) with cancer reaching a key point in their care pathway whose family and carers receive support with identified psychological and social needs.

Numerator – the number of people in the denominator receiving psychological or social support.

Denominator – the number of children and young people (aged 0–24 years) with cancer reaching a key point in their care pathway whose family and carers have identified psychological or social needs.

Data source: Local data collection.

Outcome

Children and young people with cancer, and their families and carers, feel supported during their care.

Data source: Local data collection. National Cancer Peer Review Programme Manual for cancer services: teenage and young adults measures: 11-7D-210 TYA cancer measures patient experience exercise.

What the quality statement means for service providers, health and social care practitioners, and commissioners

Service providers ensure that the psychological and social needs of children and young people (aged 0–24 years) with cancer, and their families and carers, are assessed at key points in their care pathway, and that protocols are in place for referral to the appropriate specialists, such as psychologists.

Health and social care practitioners carry out psychological and social needs assessments for children and young people (aged 0–24 years) with cancer, and their families and carers, at key points in their care pathway, and use the results to inform the care plan and offer appropriate specialist support.

Commissioners ensure that they commission services that assess the psychological and social needs of children and young people (aged 0–24 years), and their families and carers, at key points in their care pathway. They should commission services to provide specialist psychological and social support to children and young people with cancer, and their families and carers.

What the quality statement means for patients, service users and carers

Children and young people with cancer, and their families and carers, have their psychological and social needs assessed at different stages during and after their treatment. These assessments should result in a care plan that can be used to get extra help and support if they need it.

Source guidance

Definitions of terms used in this quality statement

Psychological and social needs assessment

An assessment of psychological and social support needs that includes:

  • patient information needs and coping skills that are age-appropriate

  • family information needs and coping skills

  • financial support

  • practical support

  • social and cultural circumstances

  • educational and employment needs

  • the needs of siblings

  • relationships with peers

  • spiritual needs.

The assessment should result in a care plan to meet the identified needs, agreed with the child or young person, and their family or carers. [Expert opinion and adapted from Children and young people with cancer: improving outcomes in children and young people with cancer. Psychosocial care: page 74, paragraph 4]

Key points in their care pathway

The key points in a care pathway when psychological and social needs should be assessed are:

  • at diagnosis

  • during treatment

  • at the end of treatment

  • during long-term follow-up

  • at relapse

  • during palliative care

  • following bereavement (for families and carers).

[Adapted from Children and young people with cancer: improving outcomes in children and young people with cancer. Psychosocial care: page 74, paragraph 3]

Psychological and social support

Psychological and social support is the supportive care received by a child or young person and their family or carers during active cancer therapy and long-term follow-up, and it may include respite care, palliative care and bereavement counselling for families and carers. Psychological or social support may help with:

  • how the child or young person perceives the challenge of the disease, its symptoms and the side effects of treatment

  • problems experienced by the child or young person with body image, relationships with peers and potential partners, difficulties with schooling and other education, or difficulties with employment

  • the disruption of the normal transition for young people from dependence on their family to independence

  • the shock and grief a family experiences when a member of the family has a life-threatening illness.

[Adapted from Children and young people with cancer: improving outcomes in children and young people with cancer, Psychosocial support: page 73, paragraph 2]

Equality and diversity considerations

When providing psychological and social support for children and young people with cancer, any potential difficulties in accessing services, which may include distance, disability and financial barriers, should be taken into account.